Thursday, September 6, 2012

Nothing more validating than knowing you're not looney.

Update on Me


So I've been doing a lot of whining about my headaches. I have been feeling like such a wimp. I mean, who can't deal with headaches?  Oh, but they've been awful. They were keeping me awake at night - EVERY night. I couldn't think straight. I had gotten clumsy. I was walking into walls. Dropping things. I couldn't tell if it was because I was just so exhausted or IF it was something more... My relationships were being affected - negetively. All of them. I'd missed work, even one day not showing up when I was on the schedule because I could have sworn that I wasn't scheduled. (This is NOT characteristic for me and I was/am mortified.) I'd missed a lot of church. Missed a lot of family/friend gatherings. Missed a lot of LIFE.

But the Monday before Labor Day, I had a doctor appointment and I told my neurologist just how miserable, frusterated, and exhausted that I was. AND I told him that I thought I needed to go to the hospital. Even though I have been a "frequent flyer" at the ripe ol' age of 29, throwing around this option isn't something I take lightly and he knows that. He took me seriously and within minutes had me orders to have me admitted. *sigh* I'd been doing SO good for SO long... So this was a bummer... But I'd been trying to muscle through those headaches since June and I was NOT winning.

So on Aug. 27, there I was getting a name bracelet slapped to my wrist and a bag of IV fluids hung. First they drew a lot of blood work to run lab tests. That is pretty standard. They also took a urine sample to get lab tests from that. My lab work came back pretty beautiful. I was actually sort of shocked with how good it was. Forgive me, I might speak "nurse talk", but my H&H (hemogloblobin and hematocrit) were perfect. I was thinking they might be a little low which might explain the clumsiness, but nope. Perfect.

Meanwhile, I'm able to get some pretty powerful pain medication in my IV, and it did help for about 2 hours, but then once it wore off my headache was just roaring back. It was awful. I thought my eyes were gonna explode out of thier sockets. Also, something troubling me a little more, was my vision. My left eye had become extremely blurry. My husband and others said it even looked "lazy".

My days are sort of blended together, but my doctor ordered an MRI, but the problem was getting my pain to where I could tolerate the knocking and beeping of the test. I was already laying in a dark room with sunglasses on! LOL When we finally got that the results showed a "severe sinus infection". Now the only initials after my name are RN, but that just didn't add up. I had not run any fever. Remember my beautiful lab work? That included my WBC! They'd be all out of whack, wouldn't they? I had no drainage. A week ago I did have a sore throat and ear and took some Nyquil, but... I don't know... I didn't see my doctor that night and they started me on an antibiotic by mouth. My nurse also talked about discontinuing my IV fluids, but my heart rate kept dropping too low. Working in a hospital, I know that oral medications and discontinuing IV fluids means it's time for you to go. But I just still didn't feel comfortable. 

A "severe sinus infection" with NO symptoms since June? And what about my vision? To complicate matters further, a couple of months ago, my mom was diagnosed with cryptococcol meningitis.  Now that type of meningitis is NOT contagious, BUT, for some reason, if there's a freaky thing that can happen then it happens to us... so what IF lightening struck the same family twice. I mean, she had a lot of these same symptoms and was first misdiagnosed with migraines... Long story short, I was just really uncomfortable with the thought of leaving and felt like I needed another test called a lumbar puncture performed.

When my doctor came in, I thought for sure I'd have to sell him on it, none of my family thought that I needed it. They all thought mystery solved. I was over-reacting with the whole L.P. thing. But my doctor right away said that he wanted me to have it done and he explained all the reasons that he had, which were all the questions that I had! See! I'm NOT crazy! (-; He had barely left my room and my nurse came in and said that he wasn't joking around. He was at the nurses station on the phone with the guys downstairs getting it arranged for me to go right down. In no time, I was down getting my L.P.

Think about your skull for a second. It's a closed space, and there's not a whole lot of room for much more in there, right? There is stuff called cerebrospinal fluid (CSF) that covers your brain and spinal cord, but still there's limited space so you can only have so much. Normally you have about 14.5-15 ml in your brain. The doctor that did my L.P. talked to me the entire time and knew that I was a nurse. He knew that I was curious and told me right away what he saw. So first he saw clear fluid. This is good. Cloudy fluid would be indictive of infection, but of course the fluid had to be sent off for testing to be 100% verified. But then he said the pressure was way up. It took him a second to measure it, but when he did mine came back at 33 ml. I had 33 ml!!!! No WONDER my eyes felt like they were going to bulge out of their sockets! They were!

**Pat on my back here for listening to my gut, or nursing voice, or whatever and making sure I got that L.P. and finding out what was actually wrong!**

So, I stayed in the hospital until Sat. Sept. 1 - 6 long days. Then I came home and thought that I was going to die. I wanted to die. I think I must have had a spinal leak from the L.P. because as long as I laid down real still, I was 'ok'. I mean, my head hurt, but it was tolerable. But if I sat up to eat, drink, use the bathroom, etc.... Oh it was HORRIBLE! I'd vomit, get dizzy, my head hurt worse that anything I've ever felt. It was awful. It was the weekend though, so I knew I'd have to go to the ER and I didn't think I could bare sitting in the ER for hours. and Monday was still horrid but it was Labor Day so I'd still have to do ER. By Tuesday, I had started feeling better when I sat up and I actually ate quite a bit. Then by Wednesday I took my first 'real' shower in well over a week!!!

My current prognosis: During the L.P. they removed 3.3 ml of CSF, still leaving quite a bit. But the problem is, removing too much too quick causes just as many problems as having too much. Right now I'm taking an antibiotic. Not for the "severe sinus infection" because really they think what they were actually seeing is my "scrunched up brain", but because there were a couple of WBC's in my CSF. Then I'm taking prednisone. It does 2 things. 1) Makes you fat 2) Decreases inflammation to encourage drainage of CSF. Next I'm taking 2 different drugs that slow down the production of CSF. And a nausea pill cause while all this is going on my equillibrium is out of whack so I get dizzy and nauseas. And a sleeping pill cause it's import for my brain to be getting adequet rest. I don't know. There's a whole heap of pills! My husband had to buy me a pill box. :-(

Today I feel okay. God's been good to me. I'm just really tired. I sleep a lot. But I can see a light at the end of the tunnel, and that's always a good thing. Hope that answers everyone's questions. Thanks for all the calls, cards, texts, love, and support! Your prayers mean EVERYTHING to me and I definately feel each and every one of them!

2 comments:

Miranda Spangenberg said...

Anytime you want a visitor just text me. You know I'm pretty good @ whispering or we canjust sit & look @ each other (no noise). I miss you terribly! I am praying for relief from the pain & healing. Love you!
MIR

Anonymous said...

OMG I just want to fix it for you! Words cannot express how much you mean to me and I hate to know you are hurting. I can't wait to come see you! I won't stop praying for you.

Love ya
Tam