Five Years Ago Today...

HeavenlyOne · #1 03-11-2009, 06:44 PM

…was the beginning of the rest of my life. Hard to believe it was that long ago, yet it seems like it was a lifetime ago.

A little history for those who may not know. This is long because it’s a paste from something I’ve posted in the past. Sorry about that.

In June 2002, I was moving from Virginia back to southern Illinois. We didn't have a place to live yet, so we stayed with my in-laws. After two weeks of living there, I began to suffer from headaches. This didn't alarm me at first because I've had headaches all my life and since about 1998, I would have one that would last for about 3-4 days, then go away. It was severe and nothing would touch it, but thankfully it happened every couple months or so.

I had tests from time to time all my life, but nobody has ever explained why I had headaches, as they weren't migraines. I was in a car accident when I was 6, and I wasn't wearing a seatbelt. My mom rear-ended someone and I hit the windshield, cracking it really good with my head. She didn't take me to the hospital, stating to the officer that I was fine. This was the only explanation anyone had for my headache problem.

After my headache in June lasted for more than two weeks, I became concerned. I told my husband that I believed I was becoming toxic to ant spray that my FIL sprayed liberally in his house and that we needed to leave. We went to southern Illinois, two hours from my in-laws house, and stayed in a motel while looking for a house. By the end of the week, I went to the local ER. They gave me a shot of Demerol and Toradol. Nothing happened. They gave me a second dose but still no change.

I went back to my in-laws and went to the ER there the next week. By now, my vision was acting up, my balance was off, and the headaches would not cease. The doctor explained that he thought I was depressed and having anxiety attacks. He said my current lifestyle of living with others and in motels was too much of a strain, and the stress I wasn't able to handle.

I asked him why my vision was acting up and told him I was seeing double, but in a vertical way, not horizontal. He said that stress wouldn't cause that and I should see an eye doc. I left crying and highly upset because I knew that stress wasn't my problem. I've dealt with much worse in my life without having health problems.

Feeling that nobody was going to help me, I believed that I was going insane. Literally going insane. I remember telling myself, "This is what it feels like to lose your mind." I even told my husband that I should probably seek a psychiatrist and submit myself to a mental hospital, or I was going to die.

Two weeks later, I'm back in southern Illinois and decided to see my former doc who did extensive testing after my headaches became more severe in 1998. I should also add that when I went to the ER in 1998, an Xray showed a mass in the front of my brain. CT scans were clear, and I believed that God healed me at that time.

My doc listened to what I was going through and set me up with an eye doc and also a neurologist. She said I had a condition known as Pseudotumor Cerebri. I looked at her funny, thinking she was making this up. She told me she was serious and to look it up online. I did so when I got home and was amazed at what I was reading. I knew exactly what they were talking about! We found a house about this time and moved in.

In late August of 2002, I went to see the eye doc. He did his exam and asked me if I'd seen a neurologist yet. I told him that I was seeing one in three weeks. He started getting excited at this point and told me that I had to see him the very next day because I was about to go blind! My optic nerves were so swollen they were about to burst, and once they did that, I'd be blind for life. This explained why my double vision was vertical and not horizontal.

The neurologist saw me the next day and confirmed the diagnosis that my primary doc mentioned to me. A spinal tap was done and also confirmed what the docs said. I was sent to St. Louis for surgery to implant a shunt in my brain.

I was in Barnes-Jewish hospital for a week. During that week, I had another spinal tap done and other neurological testing. The chief neurologist told me that my docs didn't know what they were talking about or doing in regard to my testing, but there was nothing wrong with me. At best, I had tension headaches. I was sent home in disbelief.

About two weeks later, my headaches subsided. My neurologist told me that sometimes, relieving fluid out of the spine would 'cure' this illness, and I was now feeling the effects. I signed up for college classes to be taken in the spring and get on with my life. I started classed in January and things were going well, but in March, I started feeling the pain coming back. I ignored it and rebuked the devil and felt that this time, it probably was stress causing it.

I took classes in the summer as well, but by the middle of July, my headaches were full blown once again. However, I was getting ready to start the LPN program and was very excited. I hoped to just make it to December and perhaps have surgery then, being able to go back to school in January. I'd read where people recovered from that surgery within two weeks, so I would have plenty of time.

After three weeks of being in school, I had to drop out. I was unable to concentrate due to the neurological problems, which included problems with word finding, speaking the right words in the right order, and understanding the words others said to me. I felt like I would never get better, and since I've never been sick other than the flu twice during my life and an occasional cold, I didn't want to accept that I would need nursing care or die from this illness.

In Sept 2003, I had another spinal tap and was hospitalized (for some reason, I can’t handle the fluid being taken out and had further problems that required nursing care). The hope was to send me again to St. Louis for surgery, but they wouldn’t accept me. Instead, they wanted to see me as an outpatient.

However, as luck would have it, my symptoms started subsiding once again, but it was short-lived. Where I was headache-free for about 6 months before, this time it lasted about six weeks, and by Thanksgiving, the headaches were back. I remember crying late at night thinking that I would be dead by Christmas and when they did the autopsy, and large chunk of tumor would fall out of my brain and they would exclaim, “Well, she was right after all!”

I started seeing a neurologist in St. Louis, since the one I had said he could no longer help me. The new one said he could help me and wanted me to go through yet another battery of tests. This included a spinal tap and I told him I would have to be hospitalized. So in Feb, I was admitted to Washington University Hospital and had a friend with me, since I was unable to drive any longer.

continued below...

HeavenlyOne · #2 03-11-2009, 06:45 PM

Spinal taps were a horrible experience. I had to be sedated quite a bit without going out, and the pain was tremendous. They often had to use an Xray technique to make sure the needle was going in properly. At this point, I’d had six spinal taps done, but this one was the worst one of all. The pain was so great, I thought he was killing me. I don’t remember a lot, but they were concerned that I was losing touch somehow, and they asked my friend to hold my hand and help me though the procedure. It took about 90 minutes, which was an extreme amount of time, only to learn later that he had medical students doing it. I would never have consented to that had I known ahead of time.

My spinal pressure was now 3-4 times the norm, when before it was about double. I don’t remember much more about that hospital visit except that I left AMA because they refused to give me pain meds that were more potent than Tylenol 3. I was taking Oxycontin and Vicodin at home, so Tyl 3 was like eating M&Ms.

My husband took me to our local hospital, two hours away, and I was admitted there for about a week. I don’t recall much about my hospitalizations because I was constantly given Morphine, Oxycontin, and Phenergan to help with nausea from the pain meds. I was sleeping continuously.

In the meantime, I’d met a woman online who was diagnosed with this same illness who lived near Chicago and had surgery in Jan 2004. She stated that if things didn’t go well in St. Louis, to give him a call and she was sure he would perform the surgery. She didn’t have near the problems I was having.

I was set up with a neurosurgeon in mid Feb. I was excited and so were others who had watched me during this time. The surgeon assessed me, took measurements, rubbed my head, sat back and kicked me in the stomach with this blow….”There is nothing wrong with you.” I said WHAT?? He told me that he was an experienced neurosurgeon and that everyone was wrong about my diagnosis. He said there was no way he would do surgery on me, especially due to the risks involved. I was crying, having had a headache for about 8 months with about a 6 week break.

On the way home, I called my friend in Chicago. She told me to call her surgeon right away, which I did. I would be seeing him at the end of February…the very next week. LadyRev came up to take me and she was present on the surgeon’s office. He listened to my story, looked at my tests and medical records and said something that in itself almost took my pain away…..”First of all, I believe you, and I will help you.”

The surgery was set up for March 12th. I was so excited! Finally, someone was going to help me! I received a call on March 10th asking if I could be there the next morning instead, due to a scheduling conflict. I called LR, who was taking me, and she scrambled to change her plans with work and church. She arrived at my house (at the time, she lived in Memphis, 3 ½ hours from me) at 11:30PM and we left immediately. I had to be at the hospital at 5AM.

We arrived in time and they allowed LR to be with me the entire time until they took me into the surgical suite. She prayed for me and we talked about a lot of things. I gave her a note of things she needed to do in case things didn’t go well. My head would have to be shaved, but since I had very long hair and didn’t want it to go to waste, she put my hair in ponytails and cut each one off. It was a very weird feeling.

I awoke out of surgery feeling that someone had taken a bat to my head. I had two incisions with staples on my head and one stapled incision on my stomach. I don’t remember much about the first day, but the second day, I was amazed at how little pain I felt. I even refused pain meds. I was discharged that second day and went home. LR wasn’t able to stay with me, but even though I still had a good headache, I was feeling so much better that I could take care of myself.

I had a good friend near me who drove me where I needed to go, even picking me up for church. I don’t exactly remember when it happened, but it was within two weeks, I believe, that I woke up one day and realized…..I had no pain. None. It was gone! I signed up for nursing classes once again and was accepted.

I graduated from the LPN program in August 2005, moved to Wisconsin, and graduated from the RN program in May 2008. I’ve not had any problems except once in Nov 2004, but I think it was stress related. No headaches, no problems with the shunt, and my neurosurgeon told me over a year ago that unless I had problems, he didn’t need to see me. I have since moved back to southern Illinois and now work on a critical care unit at a local hospital…one of the nation’s top 100 heart hospitals, in fact.

God is so good to me. Even though He felt it best not to do an absolute miracle in healing me, I felt it was His will for this to happen in my life. I have no lasting effects at all. I had been having memory problems that hindered me a bit, but the other day I realized that my memory was clear and I hadn’t had problems in quite a while. Most people with this illness, even after surgery, the neurological problems weren’t able to be corrected or reversed, so they still suffer with that aspect. God healed me from that happening, and I give Him all the honor and praise for what He’s done in my life.

I feel that I now have a gift…something I couldn’t see before. I deal with very sick people, and because of my experiences, I have a greater understanding of the frustration and depression that people go through when they are sick. I can do more than just empathize…..I truly understand! I can and do witness to others the power of God in my life. I’m so undeserving of God’s goodness and love, but I want to thank Him for all he’s done for me and continues to do in my life and that of my children.

Thanks to you all for ‘listening’.