Still waiting

I told myself after the last post that I wouldn't post again until I was healed, well shoot I am not sure when that will be, so I have to go back on my word.

We went to the neurologist again today. Got our questioned answered, even if they aren't the answers I want to hear. I want to hear, "Staci- you are going to be better right now,, you can resume you life starting now." What he did say is let's try some meds- Depokate and Prednisone- great now I get to be irritable, gain weight and not sleep, but hey if it will help get rid of this annoying pressure in the back of my head I will try most anything. I am going to be optimistic and hope and prayer the meds will help, I am wearing down and getting sick of this whole ordeal. I will never take me health for granted again- the first day that I am pain free, I am going to dance and sing like no other!

I was kind of hoping we could do this test that they shoot die in my spine and they can take a look at where the leakage of the spinal fluid is coming from, but the neurologist says it is too soon for that. They seem afraid to create another whole in my spine and the test can be inconclusive, but if I don't get relief down the road, I think it will be considered. In the neurologist eyes, a month isn't too long, for me it seems like eternity. It's going to heal, it just is going to take time, but that's hard to tell my type A, controlling personality.

Ok, enough complaining. The good news, I got all my scrapbooking caught up, the boys baby books caught up, several books read, daily reading of the Bible and forming an addiction to several day time tv programs. I can now be up several hours during the day, before the pressure gets too annoying and I have to lay down. At least, I can get our house taken care of, make meals, etc.

I hope to post soon with me dancing and feeling awesome!

More growing must be needed

After my lengthy last post, I was full of optimism, thought I had been to the Valley and on my way up. Well, I guess I haven't learned yet what God wants me to. Thursday night, the headache in the back of my head returned. Friday- I returned to a different anesthesiologist to get a second blood patch- this one will do it right? Well, a different anesthesiologist with a different point a view was not as willing to do it, he did, mostly due to the fact, I had my heart set on it, thinking if the first one worked for awhile this one is sure to fix me up. Well, it didn't.





I spent the weekend lying around, I can be up about 5 to 10 minutes with the pain in the head returning to a point it is difficult to tolerate and then I go lay down for a few hours and start the process again. Fun stuff I tell you. I returned to the NEUROLOGIST ON TUESDAY HAD ANOTHER MRI OF MY BRAIN- A SPECIAL ONE TO LOOK AT THE VEINS AND SINUSES (I THINK). GOOD NEWS- IT CAME BACK NORMAL. I WAITED ALL DAY YESTERDAY FOR THOSE RESULTS AND WANTED TO KNOW WHAT WE WERE GOING TO DO NEXT. WELL, IT WASN'T WHAT I WANTED TO HEAR- 1 WEEK OF ALMOST COMPLETE BED REST, FOLLOWED BY ANOTHER WEEK OF UP AS TOLERATED. WHAT! I WANT TO BE FIXED LIKE YESTERDAY- I WAS SAD, ANGRY, MAD, DISAPPOINTED, BUT NONE OF THAT DOES ANY GOOD. SO I WILL FOLLOW WHAT THE DOCTOR SAYS AND TRY AND MAKE THE MOST OF IT AND CONTINUE TO PRAY FOR HEALING.



A FEW WEEKS AGO IF SOMEONE WOULD HAVE TOLD ME THAT I WOULD COULD GET TO LAY AROUND FOR AT LEAST 3 WEEKS AND DO NOTHING BUT DRINK AS MUCH CAFFEINE AND FLUIDS AS I CAN, I WOULD HAVE THOUGHT THAT TO BE A TREAT. BUT, NOW THAT I AM FORCED TO DO IT, IT JUST TAKES THE FUN OUT OF IT AND IF I KNEW I WAS GOING TO BE ALRIGHT WHEN THIS WAS DONE,I COULD TRY AND ENJOY IT, BUT WORRYING CAN BE A LIFE KILLER.



SO NOW I AM GOING TO TRY AND LOOK AT THE POSITIVES AND KEEP LISTENING TO SEE WHAT GOD IS TRYING TO TEACH ME- I MUST BE MISSING SOMETHING. SOME OF THE POSITIVES- ERIC HAS BEEN TRULY AMAZING- I COULD WRITE A WHOLE POST ABOUT THAT BUT ONE OF THE MOST HELPFUL THINGS- SETTING THE COMPUTER ON THE FLOOR FOR ME WITH A MATTRESS- I AM GETTING BETTER ONE HANDED TYPING. I WAS THINKING LAST NIGHT THAT ZACH AND CALE MIGHT EVEN BE ENJOYING THIS A LITTLE BECAUSE ALL I HAVE IS TIME- SO I WATCH AND CUDDLE WITH THEM WATCHING TV/MOVIES. I HAVE TALKED MORE WITH THEM THE PAST FEW DAYS THEN I HAVE IN A LONG TIME. I WATCH ZACH PLAY HIS DS, LAY ON THE COUCH WHILE CALE PLAYS THE Wii. IT SEEMS LIKE BEFORE THIS WHOLE ORDEAL I ALWAYS HAD SOMETHING THAT I THOUGHT NEEDED TO BE DONE- I RARELY JUST LAYED AROUND. NOW I HAVE BEEN DOING NOTHING AND THE HOUSE ISN'T FALLING A PART AND EVERYONE IS SURVIVING-MAYBE THAT MAY BE A LESSON TO LEARN.

WELL, I RAMBLED ON ENOUGH, HOPE MY NEXT POST WILL BE WITH HAPPY PICTURES AND A STORY OF HEALING.

In the Valleys I Grow

I am not writing this entry for the people that follow my blog. I am writing this for me to always remember the past 4 days and for me to always keep life in perspective. You see, I like things done- the counters clean, the laundry folded, the calendar planned out weeks in advance, etc- these things haven't always been done, but I was anxious inside until they were complete. Over the last few days I have realized life can change on a dime. I am not sure how I will change, but I know change needs to be made within me. Revisiting the last few days in detail- it may bore you if you read on.



Friday evening- sitting on the front steps, Eric and I enjoying the great spring weather, talking with neighbors, watching Cale play. The kids go to bed, Eric and I watch the movie together, "Blind Side", what a great feel good movie. After the movie, we go into the boys room and watch them sleep, we do that every once in awhile and praise God for them. Like most parents, we are proud of them, happy for the way they are growing up and so very thankful. Eric and I talked about how smooth life had been going lately (someday, we will learn to never say that :))



Saturday morning- Eric and I have are to do list prepared for the day, we discuss what each of wants to accomplish for the day and that we hope to be done by 3:00 so we can give the boys their new Wii game and we can all play together. Eric leaves to go run his errands. The boys and I go up to their room- 1 st thing on my list- rearrange the boys room. We make a plan and we start moving beds, I bring the vacuum upstairs, I lift the TV to it's new spot- things I have done several times in the past. Room is done, the boys love it, now time to arrange clothes- pack away winter clothes get spring/summer clothes out. I am sitting down by the boys dresser folding clothes up- OUCH! My head hurts- it's too early in the morning to have a no diet Pepsi headache that comes in the afternoon. Keep going I got things to do on this list. Changing sheets, washing bedding, Man my head really hurts. Eric comes home- he got a bunch of things done, I have to go lay down, my head is really hurting me. I lay down for awhile, yeah my headache is better. Keep moving on that list. 20 minutes later- What my head hurts again. I am in the middle of a project, I got clothes here and there I have to get finished-can't leave a project undone- it's just a headache- suck it up. I got to lay down. Lay down- hey I feel fine again- this is odd. Getting the clothes put away- I am doing a half assed job, but it will be done. I recruit Eric's help just to get done- he does without complaint.



Being a nurse, I see alot of worse case scenarios, so I try to rule things out in my own head. Get the blood pressure cuff- blood pressure is good, I can move all my extremities, no problems with vision, okay it will get better, time to start to drug up. Let's start with 2 Aleve, didn't touch it, how about some Ibuprofen, nope didn't work, okay Tylenol- something will work- nope headache continues only when I am up. Should we go to the ER- no it's just a headache and that's not really emergency and my insurance doesn't pay if it's a non emergent visit to the er. We'll call the Mercy nurse. I talk with her and she says to keep doing what we are doing and it should get better. I will go to the urgent care tomorrow if it's not better. Urgent care not open on Easter- just hold tight- it is open at 7 am on Monday morning, I just have to wait until then, I can do it.



Needless to say, my to do list didn't get completed. I layed on the couch watching the boys play their new Wii game and watched basketball the rest of the night, oh well, I will fell better tomorrow. Took a tylenol pm and slept like a baby.



Sunday: Laying in bed, it's going to be better today, I get up and damn, it still hurts. We have plans today- it's Easter, we are going to all go to church, Eric is going to do his counting job at church, then we will all going to go to Marshall town and spend the day with Eric's family. I shower, this isn't going to work, I can't go my head is hurting, but fine when I am down, I will just stay home and the boys will stay with me until Eric done counting and then they will go to Marshall town and I will just rest. They leave- I want them to go, but sad that I am at home. I try and watch some TV, I think it's getting worse. As soon as I sit up, the worse possible pain is in my head, no longer taking a few minutes, it is happening instantly. I call the Mercy nurse again- tell the story again- she states I better go to the er and I am starting to freak out. I call Eric desperate and ask him to please come home, I think I need to go to the er. His parents are wonderful- they kept the boys with them, so we don't have to worry about them. While Eric is heading back, I go upstairs to freshen up a bit, even in the amt of pain I am in, I am still somewhat vain- at least clean underwear, deodorant and teeth brushed. When I am in the bathroom, home alone, I start to feel like I am going to pass out. I get to my bed and cry out please God help me. I call my sister Sherri, sobbing to let her know I am scared to death. She talks me down, I didn't want to talk to my parents- they don't need any extra worry, but they are at Sherri's house. They all talk to me while we wait for Eric and they have a computer and I ask them to type in positional headache, it's awful up and mostly goes away when lying down. Lexy found something- she clicks on it and mom reads it to me. Something called SIH: spontaneous intracranial hypotension- she reading the article- tells me some stuff, I ask her to stop because I am freaking out. Eric is home, he gets me loaded in the van, I have to lay down.



In the ER: This could be a long story to, but I am going to summarize: triage nurse: tell story, next nurse: tell story, Physician assistant comes in: tell story- need cat scan, give her drugs- Dilaudid, Zofran, CT scan done, Cat scan normal, only about 93% able to tell if there is a brain bleed- need to do a lumbar puncture- need another doctor. Ask PA how about a spontaneous rupture of spinal fluid- NOPE doesn't happen. MD comes in-tell story, explain lumbar puncture, can spontaneous rupture of fluid_Nope doesn't happen, get lumbar puncture done. No blood, but have low pressure, MD didn't think that meant anything. (I am not upset with the care I got in the ER, they were following the protocols, but probably will bring to their attention in the future that Spontaneous rupture does happen, but only 1 in about 50,000 people). About 6 hours later, No answers, but know that I am not dying, do you want to get admitted or go home on pain meds, I am nauseated, uncomfortable and just want to feel good in my own bed, let's get the heck out of here- I will feel better tomorrow. Dry heave, headache pounding have to keep head flat, but I am home!



Monday morning- still there, start to sob, what is happening to me. Eric goes to work, Zach to school, Cale to daycare- job to today is to make appts- got a referral from the er to make appt with neurologist. Wait for offices to open- Ruan Neurology- they take my info, they will call me back, I ask when the next available appt is- April 22nd, what? I can't live like this for that long (I say to myself)- something is going to work out- I am in a "fight"mode. Call family doctor can't get in until tomorrow, but here try some migraine medicine. SUre, I am willing to try anything. Sherri sends us the links about the SIH- Eric reads over his lunch and makes copies. I call my boss to update her and remember that one of my coworkers significant other is a neurologist - am I so bold/desperate to ask her to help me get in. I tell my boss my delima and she says I will call my coworker if she feels comfortable asking great, if she doesn't I will text you and tell you no. My coworker calls me I fill her in on the story, our theory it might be SIH, she tells me she will talk to her significant other. She calls back: be at his office at 8:15 am tomorrow morning and he will see me at 8:45. Eric comes home to take me to the chiropractor- we cry together- so very thankful I will get to see someone tomorrow. Yes I did say chiropractor- remember I would try anything- I can't sit up for more than five minutes- I feel like my head is going to explode. I trust my chiropractor and I knew he wouldn't do anything he didn't feel safe. I think I might have kind of scared the chiropractor- I looked awful and Eric is holding me up and we are telling the story, he looked at my neck and could tell it was out of place, but just took a little pressure off with some gadget and wished us good luck. At this point, I would probably see a witch doctor in Mexico, just to get relief. While laying on my back in the back of the van, I am reading the info Sherri and sent us about SIH: on average it takes 11 months to get a diagnosis, this condition is rare, a blog about different peoples story on how they suffered trying to get someone to diagnose them. I can only read so much and then I get nervous, but the part I like is once it's diagnosed there is something that can try and fix it. We call my parents, do you think you could come down and help us. Eric is trying to manage me, the kids, the house and this is one of the busiest times at work for him. It is the end of the quarter, deadlines are due, he has responsibilities that need to be fulfilled. We are thankful my parents are coming down.



We are home, I am emotional AGAIN and Eric looks me in the eye and says, "It is going to be okay" He never tells me something unless he means it and I believed him. We pray together AGAIN- I didn't think it was possible,but I am even more in love with my husband. He has done everything perfect during this whole situation- patient with me, picking up ALL my slack and being there for me. My parents are here, tomorrow is going to be a better day.

Tuesday: start the day in prayer, hopeful today I will get some relief. Zach to school, Cale to daycare, mom and dad and Eric get me to the neurologist office by 8 am. I have to lay down on the benches in the waiting room- I don't like attention drawn to me, but this is all I can do. We get ready to meet with the doctor. I am nervous that if he doesn't know about SIH how we are going to approach it- working with doctors as long as I have, it is my opinion it is best if the doctor thinks things are his/her own idea- will have to proceed with caution if having to give him our information. He arrives- professional, polite, checks everything over thoroughly and then gives it to us- sometimes people develop Spontaneous leaks in the spinal column. He knew exactly what was going on and came up with a plan for the day. 1st need an mri, 2nd try a bag of caffeine sometimes that constricts things to seal the area up on it's own and meet with an anesthesiologist to talk about a blood patch. MRI done, Caffeine infusion in- maybe a smidgen better, but headache still pounding, along with my heart. Anesthesiologist can't see us until 3:30. Mom and dad take me home, Eric goes to work. Eric brings Cale home and picks me up and we go to see the doctor. It's after 4:00- I am concerned it's too late in day to get anything done today, preparing for that. The doctor comes in- talks about the spontaneous leaks of cerebral spinal fluid- they don't know the cause- it could have been from me moving furniture, but that's not for sure. It may never happen again, it may happen again tomorrow. He gives me a choice to try more pain meds (I was trying to be open minded, but usually anything stronger than otc medicine makes me throw up) or he could do a blood patch. The problem with a blood patch is he has no idea where the leak is- so he won't even give us odds on how successful it would be. When someone has an epidural and they leak, blood patches are about 80% successful and they can do a second one and that is over 90% successful, but that is because they know where the leak is at. Eric and I decide let's go for it. All day, I felt if I could just get this blood patch things will be better. I also liked, no loved his comment when I ask what about my future and he says I can't stop living, after 24 hours I will have no restrictions!

The Anesthesiologist was able to do it yet today- I was so thankful. They were going to put me to sleep with conscious sedation, but preferred not because I do prefer pain than dry heaving for several hours after. It was a breeze, they took 15 cc of blood from my arm and put it in my spine. I layed flat for 45 minutes and sat up and the first time in 4 days- I could smile when I sat up, praise GOD! The next 24 hours were critical to be still, like a scab you don't want to reopen it. The doctor said he would repeat the patch one more time on me if he needed, but if the spontaneous leak happened again after that- I would need to go through further testing.

Eric takes me home, I am able to sit up in the front seat with him- sitting up never felt so good. I am crying again- this time because I am happy. Now what am I to learn from all this, I am a firm believing things happen for a reason. I am still working on that. I know it's in the valleys we grow. I have come along ways since struggling with infertility during parts of that time I was angry with God and having a lot of self pity. This small valley I just went through I kept singing several songs- one being "I will praise you in the storm" and through this all- I knew God was not going to leave us, in fact I think we may have made a record in the fastest diagnosis of Spontaneous Intracranial Hypotension.

If you made the decision to read this all the way through- thank you and you have ever right to call me out if you ever hear me get uptight about things and remind me to read my blog entry In the Valleys I Grow" because life can change in a matter of seconds and important just to ENJOY THE MOMENT!

Today, I am taking it easy for my 24 hours and plan- GOD WILLING to return to work tomorrow.