Did You Eat Too Much Polar Bear Liver? (Chap 10)

"Please be sending lots of prayers and positive thoughts today. At 3:30, I will be having the spinal tap. I'm not scared because I assume it is a lot like the epiderals I got with the c-sections, but I'm still stressed out and nervous big time. Thanks for all the prayers and positive thoughts!!" {Facebook Status from Morning of August 5, 2010}

"Spinal Tap was a no go. Something was not right with my spine and to top it off I was on the verge of passing out. I'm so disappoint that words cannot even begin to express my frustration from it all. They are going to schedule a different type of spinal tap where they will use an x-ray machine and put me out. I'm feeling very low right now along with feeling sorry for myself. Please pray for me!! :0(" {Facebook Status from Afternoon of August 5, 2010}

"Just depressed and tired. Need to go to bed and not try and wrestle with God. His plan is more than I can imagine, but I'm having a hard time understanding His reasoning behind all of this. As Eric's grandmother Elsie said once, "All is fair in God's perfect timing." I just have to keep telling myself that." {Facebook status from evening of August 5, 2010}

"Thanks for everything. I prayed so hard that the spinal tap yesterday would give me relief from the pain that I began to honestly believe it was 'the answer' to the pain. God just has other plans for me. The other proceedure has not been set up yet. Just going to rest today. Thanks for those that are watching my kids for me esp Crystal Goff who is taking on Jillian for the day!" {Facebook status from August 6, 2010}

"All the proceedures have been set up for next week. On Wed the 11th, I have to have a CAT Scan. On Thurs the 12th, I'm having the sedated, x-rayed spinal tap. Then I'll probably be bed ridden for the 13th. The 13th is our anniversary and I'm sure that is not the type of bed ridden one would want for that, but oh well. :0)" {Facebook status from August 6, 2010}

"Last night, I was laying down to go to bed when Eric yelled "Wait!" He ran in holding a very frightened cat and started moving the cat up and down over me. He put the cat down and told me that he had just given me a "cat scan." Him and Hannah laughed hysterically. Oh boy!!! :0)" {Facebook status from August 7, 2010}

"Eric's version of a 'cat scan' actually took longer than the real version at Carle. Now to get through the next two days. I'm more stressed at being bed ridden for 24 hours than the actual proceedure. Thanks for any prayers or positive thoughts you have. :0)" {Facebook status from August 11, 2010}

"Can't eat anything after 7 this morning, so I got up early and had breakfast with Eric before he went to work. I know he's worried about everything, but we thought his time would be better 'wasted' at work than just sitting around waiting for me. Daniel is watching the kids and mom is taking me to the appt. Didn't sleep well last night, but I'll have plenty of time to rest later. :0)" {Facebook Status from Morning of August 12, 2010}

"Please pray for me. I'm in a lot of pain tonite. Thanks." {Facebook status from Evening of August 12, 2010}

"Rough, Rough, ROUGH morning!!!! Dr called and told me to take one of my meds which I did and am feeling a little better. Thank you for your prayers! Still feel horrible, but am doing better than I was at 5 this morning." {Facebook status from Morning of August 13, 2010}

"by Eric....Kris is having a very bad day. Looks like what was a migraine last night has turned into an even worse headache. She is in a little pain laying down but when she sits or stands the pain is terrible. Please keep her in your prayers." {Facebook status from August 14, 2010}

"At 10:30 today I was rushed by ambulance to Carle.Basically, the hole where they did the spinal tap was leaking fluid slowly causing low-pressure headache. They did what they called a 'blood patch.' I was able to come home around 3. Feeling so much better!! Now just to rest, rest, rest. Thanks for your payers!!! Thanks to the Minions for helping with the kids so Eric could be with me!" {Facebook Status from August 14, 2014}

I was so looking forward to this procedure. I had heard nothing but great things about it. I had heard that it would help with the headaches. I had heard that it would help with the pressure. I had even heard that just having one done might possibly send me into remission. I was pumped. I was ready to have it done. I was told that this procedure was like letting air out of a tire that was overinflated. The whole scenario was so glorious to think about that I would fall asleep imagining how wonderful I would feel after the procedure. I wanted the spinal tap done so bad that I would have camped out for hours just to get it done if they would have let me.

The original procedure was scheduled to be done by Dr. McN in her office on August the 5th at 3 pm. I wasn't feeling good that day but I was not to be deterred by much and I wanted that procedure done. I wanted to be able to say "bye-bye" to the headaches that still plagued me. I wanted to be able to get this monkey off my back and resume a normal life. If I could have "thought" my way through the process, it would have been done. However, every time she tried to start the procedure something would go numb and I felt like I was going to throw-up. Not waiting to take chances, she canceled it and said that she would schedule a spinal tap to be done under a huge x-ray machine for a few weeks later. I was crushed!!! I felt like a failure! I went home that night angry and bitter. What was wrong with my body that it wouldn't allow me the relief I needed?!?

Once again I spent that night in anger conversation with God. What else could I do? What else could be done? When was the pain going to end? I begged him to take me to heaven. I just wanted to be a part of the peace that he had just allowed me to be a part of not 3 months earlier. Why could the procedure not be successful today? I just didn't understand and I tried hard not to cry because tears only made the pain/pressure worse.

I had to have a CAT Scan done on the 11th to make sure there were no "problems" in my brain that would prevent me from a "successful" spinal tap. I found this rather ironic since I just had a MRI in May but that was too long of a time and so much could have happened during that time. No big tumors showed up and I showed up for the spinal tap that was scheduled for 10 a.m. on August 12, 2010.

I remember this being the first time I started to "hate" time and all that it came with. It was what I originally talked about in Chapter one. My mother was with me at the time but all I could hear was the clicking of the clock in the prep room. It was so annoying. All I could think was "this better help with the pain." They wheeled me back to the surgical room. I was prepped and my back was shot up with a numbing agent. I started with my imaging again with the bird and flying away to help with the anxieties I was having through this entire process.

They stuck me with the spinal tap needle. My opening pressure reading was only 19. Which is "high" but it is "normal high". Some people with IH have opening pressure readings as high as 40, 50 and even 60. I felt so confused. But then the troubles began. I started going numb on my left side. I remember the nurse asking me how I was and I said, "I can't feel my left side." Now I thought I said this rather normally but she had me repeat it twice. Oh my!! I love medical professionals. You know they are being professionals but there is a certain kind of 'professional' panic. It isn't a "normal" panic but you know they are secretly looking at each other because suddenly things begin to happen. They try to move the table so that I'm almost standing straight up (even though I'm strapped to the table). They have me move more to my right side. They put a type a drug in my IV which I think was to try and relax me some. Up to this point they did not talk to me much and I was just doing my imaging in my head but they were making me respond by asking questions about everything. One nurse was wiping drool from my mouth. I was giggling over that. I think they gave me some good drugs because I don't think the drool was very funny now. The doctor finished the spinal tap and they made me lay there until I could feel my fingers and toes. I really don't know how long that took. My mom, on the other hand, said that she was worried because it seemed like I was gone for longer than it should have been.

I knew that it was a "rough" procedure because the normal time I should have been sent home would have been by 2 that afternoon. However, because of what had happened, the earliest they were going to let me go was 4 p.m. Only if I felt like things were going well. I knew that I wasn't feeling quite right but I just was paralyzed on my left-side and giggling over drool coming out of my mouth. I wasn't for sure how I was suppose to feel. I knew I had a headache but up to that point I have always had a headache. Looking back, I should have told the nurse the truth but I told her I was doing fine and I was wheeled out of there by 4 p.m.

My headache never went away. I tried to do everything I could to make it go away. I even tried drinking pop which tasted horrible with the medication I was taking . By the evening of August 13th, I was not doing so well. By the morning of August 14th, I was screaming in agony. My body would think that I had to go to the bathroom. I would get out of bed only to have my entire body feel the need to crumple to the floor. I would slither, not crawl, but slither to the bathroom. I would try to go only to end up throwing up. Then crumple back onto the floor and slither back to my bed because it was the only place I felt "ok" if that is a term to use. This went on for a few hours. To say that everyone around me was scared, that would be an understatement. I just know I was in survival mode. I was in so much pain that I couldn't even think of anything or anyone else. My body was perilously close to going over the edge. I know my husband called my mother and they ended up calling 911.

The ambulance ended up taking me back to the ER where I had the spinal tap done. It was determined that I was leaking spinal fluid and needed a blood patch. When the doctor who was going to do the blood patch was talking to me about my diagnosis, he asked "Did you eat too much Polar Bear liver?" What? Even in the horrendous pain I was in, I said "I don't eat any liver. I don't eat chicken, cow, pork and definitely NOT Polar Bear." {I later discovered in my research that IH was first diagnosed in men who were trapped in an Arctic region where all they had to live off of was Polar Bear meat. You can contract IH by having too much Vitamin A in your system. These men ate too much Polar Bear liver which has extremely dangerous concentration of Vitamin A in it. The funniest part is, even if I WANTED to eat Polar Bear liver I'm not sure I would even know where to buy it. However, it was not how I 'contracted' this lovely disease/disorder.}

By the time they started doing the blood patch, I was dehydrated they had a hard time trying to draw blood to even get enough blood to do the patch. Then, they had trouble filling the hole. I cannot even express how much pain this whole entire process was from start to finish. Even still, when given the option to take a wheel chair to my car or walk out of the ER, I chose to walk. I was not going to let all this dictate who I was or how I was going to be treated.

Those 72 hours where the most painful I have ever experienced up to this point in my life. The pain was so bad at times that I almost went into an unconscious state and I might have. Yet, there was a purpose for that pain. I can say that I have lived through it. I do chose not to have any more spinal taps done because of it. It is my choice. There are times when I ponder if having one would help the pressure, but I know it is a temporary fix. I know that the likelihood of what happened the first time would happened again. I have talked it over with Dr. McN. She agrees with me. I will refuse all spinal taps from now on unless there is a significant medical reason behind it. No relief from my headaches is worth it. I will go blind before I put myself through this procedure again. I also believe that if a person has too many of these taps that the body just quits find natural routes to rid itself of the fluid because it "thinks" that the tap will do it for it. Now that it just my opinion. There is nothing backing it up other than what I have observed over time. I also have seen the damage it does when I person has too many spinal taps. I have permanent damage to that one spot just from that one time. I can't imagine what 15, 20 or even 30+ spinal taps will do to a spinal cord. I don't judge. I know that people do what is best for them. It is just what I chose to do for myself. I do put out the caution flag for those that may be new to the game. There is so little we know about this disease/disorder. I, personally, think there are more natural ways to help with the pressure than following the path of too many spinal taps. Yet...I have to admit...I, myself, am still tempted.

Unfortunately, after the spinal tap, my depression and anxiety would spiral out of control. In a couple of months, I hit an all time low with my life. Dawn was coming down the bend but it was still not quite there yet.

"Here's a funny for you: I was talking to the nurse at Carle ~ Nurse:Did you have the proceedure at E.D. Me: What? I don't have erectile dysfunction Nurse: (very slowly) Did you have the proceedure done at the EMERGANCY DEPARTMENT? Me: Yeah...I'm so sorry!! I'm such a ninny Nurse: Don't worry about it. (Sure...I'm sure you're still laughing about it and will for a whole week!)" {Facebook status from August 20, 2010 ~ still had a sense of humor sometimes :0)}