Sunday, April 17, 2011

Misery...and Recovery

My blogging and really, all other activies have been light this week because THIS was the hardest, most painful week of my life to date.

I have an autoimmune disease. I try to stay on top of it, not to let it slow me down but it is powerful and sometimes gets the better of me. Plus I am a mom of 4 so between life, kids, husband, home and sickness - well, you know the drill :)

On Monday morning I had a simple spinal tap . Spinal fluid was taken from two punctures to test. It wasn't that big a deal. It was done at a surgery center about an hour away - I was sedated and well taken care of. Since I had epidurals with my first two kids and no issues, I wasn't worried about side effects with this tap.

This one, however, went wrong.

Less than 24 hours after the withdrawal I suddenly got that massive, slowly incapacitating headache the nurses had warned me about. It literally became mind numbing. It became hard to see. My arms started to feel fuzzy. I felt like I was floating. In actuality, I think I was getting close to passing out from the pain. nearly went away when I laid flat on my back. It was a spinal headache...and it was monsterous.

The surgery center advised A LOT of fluid intake...and caffeine. They said to see how things progressed over the next 24 hours. And if it didn't get better, we had to take action.

It got worse.

I couldn't raise my head at all without intense, horrible horrible pain. I was in a whole new territory of problems. I could only lay down. Remember that I have 4 kids :).

Now, I have lived with pain for many years. In fact, I don't remember life without pain, it has been so long. Kind of sad :). I am accustomed to pain; I even have a high tolerance for it.

This pain was blistering. And it just wouldn't stop. From the base of my neck to the top of my head, filling my BRAIN. It WOULD NOT STOP.

All day Tuesday. All day Wednesday.

Wednesday evening the surgeon returned my call and said that I needed to come back in for a blood patch. I remember starting to cry into the phone but trying to hide it because my oldest daughter who is only 6 was lying next to me on the couch and I didn't want her to see. I knew that blood patch meant going back in to have my blood FREAKING INJECTED INTO MY SPINE. Seriously, how bizarre is that?! Weird right? She told me that I was leaking spinal fluid and the blood patch was the only way to fix the pain. And that it WOULD fix the pain. After I hung up with her I covered my head in a blanket and started to cry. My daughter pulled the blanket down so that she could see my face and said, "Oh no! You really ARE crying! Mom, don't be sad! You'll get better!"

Wednesday night was the longest night of my life. I sobbed in the shower. I prayed to the Lord to please help me get through the night to just get to the morning. At this point the pain wasn't abating enough lying down. In retrospect, I should have gone into the emergency room, but I wasn't thinking clearly and wasn't talking very much so my husband had no idea how bad a shape I was in. I actually started to feel like I was going crazy from the pain.

Once I finally fell asleep, I woke myself up GROWLING like an animal. Which started the pain up again.

Thursday morning my husband loaded me into the car and drove me an hour back to the surgery center. It took everything I had not to throw up or lose my mind in the car from pain. I kept chanting in my mind "You are strong". When we walked in the door I told the admitting lady I needed a gurney PRONTO. I knew that I was pretty close to passing out from pain.

My friendly nurses were back, though very worried to see me. They loaded me into a wheelchair and undressed me into a hospital gown. I don't remember a ton after that except that things moved fast and there seemed to be a bunch of people in the room. The surgeon came in and she herself started the IV. Someone took blood from my arm. Someone else asked my pain level on a scale of 1 to 10 and I whispered "10". Electrodes were popped on my chest quickly. I closed my eyes and started to shut things out. I quietly asked to please take away the pain.

They gave me Versed and Fentanyl and probably some other things as well and within 1 minute I was free of pain. It was blissful. I love those two drugs. After that I vaguely remember being propped up with oxygen and some pressure in my back...but the details are very fuzzy.

The blood patch. What a miraculous thing...

When I came to, I was not in pain. That was ALL that mattered. I was there for several hours. I remember that one of the nurses dressed me back in my clothes and put me in a wheelchair and that for the first time in days I was HUNGRY. I had no real appetite for 3 1/2 days and now it was back.

The rest of Thursday was a blur - I slept and stumbled around a bit dazed...but NO headache. Just a very sore spine.

Friday was the same - very very sore spine but no pain in my head. My kids were so grateful to see their mom again. The weather was beautiful on Friday. I went to my 8 year olds Little League game and sat with my friends that night on the bench and was so incredibly grateful to be alive and BACK again. I put on some makeup that night and real clothes. I felt like me again. It felt SO good.

I went from absolute misery and pain for 3 1/2 days and was blessed to come back to regular me again. That is a beautiful thing.

I am beyond grateful.

This experience was kind of life changing for me. I have a well of gratitude for life and color and beauty and my family and the weather - for ALL of it. We all take things for granted, don't we? I know that I did. I took my spinal fluid for granted and I never will again :) I live with illness; that's not going to change. But going right to the edge of what I could physically handle really got me in touch with my emotions and God and my true core ...I don't know. I'm not the same now. I'm better.

And THAT is a good thing.

My spine is still sore; it probably will be for several more days. But my head is clear and my heart is full.

Now...let's return to dwelling :)


  1. I am SO GLAD you are feeling better! How horrible. Hopefully something like that will never happen again. Love you!!

  2. Wow. Sara. You are so strong. How amazing you endured thru all that pain. I am so glad you are feeling better. I hope you find all the answers you are looking for.

  3. That was so well put, thanks for the reminder. Our bodies have so many moving, working parts it's easy to take it for granted when they all work correctly. Since we lost my dad so unexpectedly last summer I try to remember every morning what a miracle it is just to be granted another day, another breath.