Tuesday, August 18, 2009

I am home...

So, I know you are probably all wondering what the heck is going on.  If you aren't then you don't need to keep reading.  This is also for journal purposes as well.  So I had a spinal tap on the 8th of August.  I was feeling really anxious about this one because I had a horrible experience in March with my first one.  Well, I was really weak going in to the spinal, but things just went down from there.  Not so bad that I couldn't deal with it, but enough that I saw a huge difference.  It wasn't painful at all. In fact, I didn't feel a thing.  But when Sunday came around, I was so incredibly dizzy that I could not do very much.  I was seeing double, triple, quadruaple vision.  It was horrible.  I called my doctor on Monday and he said to call him if it got worse.  It didn't get any worse, but I got a call from his office on Tuesday saying that he couldn't get me in until Sept. 2nd.  This just wasn't going to work for me.  I have my doctors cell phone number so I called that and he asked me some questions on how I felt and then decided he needed to see me that day.  I was in his office by 2 and this is where the story really begins. 


Dr. Krishna did his normal assessment on my strength and was floored by outcome.  I was so significantly weaker and incredibly dizzy that it was unreal.  He walked out of the room to go get another doctor that works really closely with him and is the expert on these symptoms.  I knew at that point that I was going to be admitted to the hospital.  Dr. Lahda and Krishna walked back in the room and Ladha did his assessment.  He then broke the news to me that the only way to diagnose me and get to the bottom of this was to admit me to the hospital and keep an eye on my 24/7.  They called over to the hospital and sent me home until a room came available.  Before sending me home I asked what they were leaning towards.  The answers scared me...lymphoma (cancer of the lymphnodes), tumors, and some other auto immune diseases.  I cried the whole way home as I called family and told them what was going on.

I got a call a couple hours later saying a room was ready.  I got there and they put an IV in and began the process.  I woke up the next day weaker than the day before.  They did a CT Scan, another spinal tap, an MRI, and more tests than I could ever tell you.  There were a lot.  They decided that while they waited for the results to come back that they needed to start my treatments over again so I could start regaining some strength.  The treatments last 5 days and they watched me very closely because my blood pressure would always drop while I was on them.

Meanwhile, all my test results were coming back normal.  They were waiting for a very important one and that one didn't come back until today.  It came back normal as well, so they came to the conclusion that they had diagnosed me correctly, but I just didn't follow the normal pattern that people with this condition follow.  So they are sticking with the original diagnosis of CIDP (Chronic Inflammatory Demyelinating Polyneuropathy).  It is the chronic version of guillian berre.  

My sister, Annette, is here for a week to help me just in case Ryan is away and I need help.  They did want to send me to a rehab facility if Ryan couldn't be with me all the time.  I told them no and called my sister and she bought a ticket the next day.

I will tell you though...I could not have done this without the help of Ryan's family and LeeAnn watching Kayden while Ryan was at the hospital with me.  Also, Ryan amazes me.  He did everything I asked of him and he did it with a very loving heart.  He sees what I go through everyday and I am so grateful that he watches over me and loves me although I can't do everything I would like to do.  I love you babe!

6 comments:

Johnsons said...

So sorry that you are feeling crappy! I hope that you feel better soon and I know that I am hundreds of miles away, but if there is anything I can do, please don't hesitate to ask! I hope with all that testing that their diagnosis really is correct and that you get treated properly. Love you!

Unknown said...

Sorry you are feeling so stinky. I'm glad the diagnosis isn't worst. (Not that what you have isn't worst enough!) You and your family will be in my thoughts and prayers.

The Kennedy's said...

Camilla
well i am glad to hear you are back at home. Nothing like being home in your own place. Im glad that they got an answer and found out that it was nothing more. I hope you are doing well and sounds like you have a lot of support and help from family. You have been in my thoughts and prayers.

Robyn said...

Camilla - I am so sorry you are going through this trial of health. i think of you often and hope and pray the best for you! You have a wonderful supportive family.

Karli said...

Ryan is pretty amazing - there's no question about that. What a huge blessing he and Kayden are to you for sure. But hey, let's also give you a HUGE shout-out. You are UNBELIEVABLE! We love your family and Garrett asks about Kayden at least 3 times a day. "Where's Kayden?" "What's Kayden doing?" "Kayden with his mommy now?" So, really, we're ready to help now and when your sister has to leave. Hugs!

The Sextons said...

man that bites. I am so sorry, this back and forth stuff is hard. I am glad that you are such a good blogger I am always wondering how you are. You and your family are n my thoughts and prayers. love ya