NYC trip continued....

Kristi, me, Dondi, Traci

NYC trip continued...

We finally got in bed around 0245 am New York time. I think we were asleep before our head hit the pillow. But, before that, we stripped the beds and sprayed everything with Lysol. Of coarse, there is a huge breakout of bedbugs right now in NYC. WTH? Luckily, we did not have bed bugs, that we know of.... But our phone, remote, tables, etc where cleaned with Lysol. Dondi and I are two peas in a pod in more ways than one. Then the next morning, we wake up, sit up, look at one another and just giggle. We both have very stiff backs and necks. It was like looking in a flippin mirror. "You girls don't mind if I drive today" Justin says kind of quietly and timidly. Dondi and I just find that the funniest thing in the world. Did he accidentally spill water on me and I multiplied in the middle of the night, like the Gremlins? See, I talk to Dondi a lot on the phone but I have not seen her but once or twice in two years. It did not take me long to realize that I FOR SURE HAD THE SAME THING AS SHE DOES. We have the same protective mannerisms. For example, we both hold our heads near our ears in an upward position to relieve pressure. That helps with the cerebral spinal fluid flow in the back of the skull. We both hold our heads above our eyes. And many other things that we do the same. Frankly, I think it scared the hell out of Justin from the first few minutes that we were around Dondi. He also realized quickly that I had the same thing. He did not need all the fancy tests to tell us that. Now, keep in mind that my sister suffered for a much longer time in silence without help before she finally got to the Chiari Institute. She was much sicker than I am. Although, at times, it does not feel like it. I have some other weird, rare, symptoms that the doctor's are not sure about. They think that maybe I may have had a fungal meningitis or have an autoimmune illness along with Chiari and Tethered cord. OK. So back to Day one of testing. We are in the waiting room. Dondi and I are waiting room and we are so similar looking and in mannerisms that a man asked us if we are twins! She was very happy. She is 10 years older but we do look a lot alike. One time I was asleep on her couch and I awoke to her kids arguing if I was their mom or aunt Kelli. So, we must really look alike for her kids to think that.

I had to have tons and tons of testing. I had MRI's after MRI's, CSF fluid flow checks, 3d checks, x-rays that cross referenced to MRI's. It was about 3 hours of testing. This equipment blows any equipment in AZ out of the water. And, thank goodness, the medical facility was clean and open, unlike the prison looking airport. As many of you know, my body has tremors that I can not control. Much of the testing was flat on my back. A lot of the testing has to be re-done due to the uncontrolled body movement. The medical staff was really nice about it though.

The next day was the day I had been waiting for! When people finally get to the Chiari Institute, they are usually on their death bed. Luckily, I am not. I am in bed 24/7 though. That is because of my sister and my pure pushiness and nursing background. When I looked around at the other patients, they looked so bad. It is really sad. They have to wait on dr referrals or someone to help them. The sad part is that the dr's that are supposed to help them, know nothing about this illness. I have to do something about this! Anyway, as sick as I am, I am not as sick as them. Both the senior neurologist and senior neurosurgeon recommended surgery. They diagnosed me with Arnold Chiari 1 and tethered cord both. Just as I suspected 4 months ago. It is the same thing my sister has and it is genetic! I also have Ehlers-Danlos Syndrome. It is a inherited disorders that weaken connective tissues. Connective tissues are proteins that support skin, bones, blood vessels and other organs. It is makes your chances of having tethered cord, much higher. Finally, an explanation of why I have been a "circus freak" my whole life. :) I am hyperflexible. The doctors were really getting a kick out of this and I really did not know this was weird! ha ha ha. It also explains why my knees hurt. The ligaments are loose so the joints hurt, all the time! Wow, now I understand why I have not felt good my whole stinkin life!!!!! I know it is weird that I am happy they found something but it is just justification that it is not in my head.

So the medical board will be reviewing my case in two weeks. The neurosurgeon believes I will have a very good outcome. He said a positive outlook increases the outcome. Here comes the queen of positive!!!!!! Although, I do owe my husband and my sister a huge apology. I was so stressed out and upset. The whole trip I was a mess and grumpy. Hopefully they will forgive me and find it in their hearts to understand that. I have had a huge weight lifted. Now I am excited, I know that is weird, but I am excited for surgery! I can't wait!!

Have a wonderful and safe weekend. See some of you Saturday night at the Wyndham! I just got a signed Cardinal football and 4 really good D-backs tickets (with a choice of home games) for the silent auction to go along with the other really good stuff I already have!!!! Thanks everyone!!!!!

New York arrival

We made it! We made it to and from New York, in a marathon visit. We woke up Sunday morning at 0500, left at 0600 for a 1000 flight out of Phoenix. We had a planned 4 hour layover in Milwaukee that turned into 7. Two of which were on the tar mack. We arrived in NYC LaGuardia airport at 0130. LONG FREAKIN, FLIPPIN, DAY! When I was wheeled off the plane, I thought they had made a mistake and took me to a prison. The airport was small, dirty, and overcrowded at 0130! Oh, and it smelled like a sewer, forgot to mention that. So, we only had carry on, thank goodness. We head out to find our cabby that we had reserved. Wow, there are a sea of cabs....Which one is ours? "I am in the parking garage on the second floor". So my sister pushes me in the wheelchair like a real life frogger game accross the street. Horns are honking, cars are flying by, people everywhere. Did I mention this is 1:30 in the flippin morning? Why are this many people awake? We get in the elevator and get up to the second level of the parking garage and there is one other live person, what do you know--a cabby, but not our cabby. That would be too easy. "Why would a cab be meeting you here?" he said. What the hell? "You are a cabby" I thought....I start to tear up and cry...The cabby said pointing across the road and over back into the airport, "I think he means over there". Shit.....I have to play frogger again and risk my life! "I am at the end of my rope" I say in robot fashion. "Give me some back so I can just hang myself". Mind you, my sister is sick too. She does not feel that much better than me. Poor Justin, my hubby has two peas in a freakin pod. "Give me your phone!" I am going to call before we play frogger again and get all the way over there and find out we went to the wrong place again." I said almost incoherently (speech problem gets really bad when my I am tired and stressed, which I am both at this point). Dondi is almost in tears too. We go and find the cabby and he says, "I can tell you are not New Yorkers and you are not freaking out". The funny thing is that Dondi and I were so freaked and frazzled on the inside but apparently it did not show on the outside and we don't yell at others when we are stressed like New Yorkers might. To tell you the truth, that may be one of the most stressful times in my life! But we finally made it safe and sound to our hotel without much incident. And, much to my surprise, the hotel was pretty nice.

Tomorrow I will tell you more about the dr visits. Thank goodness the medical facilities did not look like the airport!

The Day Has Finally Arrived....

The day has finally arrived. We are heading to The Chiari Institute. It has been a long four months. Thanks to my sister and a lot of hard work on my part, I am finally going. No healthcare provider helped me. You heard right, not one healthcare provider helped one bit. I left the hospital with a handout on headaches. My sister walked me through what appointments I needed. So immediately, my mom and Justin started making the appointments. Within three weeks, I was in to see the urologist for the initial visit. On May 27th, I had the urodynamics testing that showed neurogenic bladder. Neurogenic bladder is what people with spinal cord injury get. The report from the urologist states that he recommends a full neurological workup. On May 28th, I saw the neurologist for the first time. You all read about that horrendous event. Luckily there has been a 100% urnaround there. Then I saw the speech therapist. She was specialized in neuro cases and was so excited to have someone that had something other than a stoke. She was my first true hope that we were on the right track. She did her work up and a computer work up and stated that it was "of a cerebellar origin". Then a few days later we picked up my medical records. That was when I was so appalled that my MRI actually showed "low-lying cerebellar tonsils" when I was told by my dr's that I did not. Now, keep in mind, I had been making all of these appointments without referrals. Luckily, my insurance does not require referrals or I would be about a year or two back from where I am today. When I got my records, the letter from the speech therapist, and the urologist report, I sent all my records to NY. I had requested that all my records be sent from the hospital but they were never received in NY from the hospital. So I sent them myself a month later. Also keep in mind, this whole time, I had debilitating migraines. Migraines that have you in bed with your head covered. The kind that if you move, you throw up and no medication for relief. So it is pretty amazing that this all got done as fast as it did. Once, New York got my paperwork, they were pretty fast to accept me. It did not feel like it but I had an appointment within a month and am being seen within two months. That is really fast. It took my sister 5 months or so. I guess I have a lot of things to be thankful for. Let me list some....One is that my sister had the illness and so we knew what my symptoms indicated. Another is that we knew who could help. Next is that I am a nurse and know how to word things to make people help me. God has blessed me with the ability to be pushy without being offensive, that is a true blessing. Lastly, I am very blessed to have friends and family that drive me around to appointments and to pick up paperwork as needed.

So, we are finally off bright and early in the morning. It is really scary to think of the long day ahead but hope is keeping me moving one foot in front of the other. I also am going to load up on meds. Justin and my sister will literally be loading me on and off the plane. I hope they take pictures so that I have some memory of New York City. Wish us luck!

Episode of House/news cast about Chiari

(This is a post that was already on Facebook but a lot of people follow my blog that are not on Facebook.)



The weirdest thing is that this episode of House (that they are talking about) aired when I was in the hospital. I felt like I should be on House or on an episode of Mystery Diagnosis. 5 days in the hospital and sent home with no diagnosis. SCARY STUFF....In fact, they sent me home wih a sheet on headaches. It is so much more than headaches.......Please help me raise awareness!


Click on the link below to watch a video on YouTube:


http://www.youtube.com/watch?v=Twkd1_RohWE&feature=PlayList&p=4F7A588F17580777&index=0&playnext=1
Monday evening's episode of House on FOX was more than just

God is building my character

Bonnie Hunt is a morning talk show that is quickly becoming one of my favorite daytime talk shows. She was an oncology nurse before becoming an actress and now a talk show host. Her humor, I just get it! She told a few stories today. One really felt like she was talking directly to me. I am sure she was ;). She told the story about when she got accepting into nursing school. Her dad was so excited and proud. He would make her put her nursing cap on and show his friends. She said that she wanted to be a theater story teller and not a nurse. (My parents are very proud too)During nursing school, her father passed suddenly. She did not want to go back. She said that her mother asked her to go to school for one week in honor of her father. Then if she did not want to continue, she could drop out. So Bonnie went to school and was assigned a man that had cancer all through his body, including his eyes. Bonnie's teacher pulled her to the side and said "I know that your dad just died but you are a professional so you need to leave that at the door and be professional." So Bonnie went in to talk to her patient she was assigned. He was in a good mood and was talking about his "bride" coming to visit. He and his wife had been married for over 40 years and he still called her his "bride". Then he said that he was glad he had cancer. He said that he was given a chance to tell all his loved ones everything he ever wanted to tell them. He had time to make sure everything was in order. He then went on to talk about a friend that had passed suddenly that was so proud of his kid. That friend did not have a chance to tell his loved ones that he loved them. Bonnie had this patient every day that week. On the third day, she looked at the back of the chart and saw where the patient worked. She went in and said, "I am not supposed to do this, but I think you may know my dad." He then said, "Yes, that is who I have been talking about all week. He was so proud of you." She said that they had a good cry together. She finished taking care of him the rest of the week. Needless to say, she finished nursing school. She then went on to say that she thought her dad had gone straight to heaven and then straight up to God and said, "We got to get her through ursing school. She is much too fragile to make it in Hollywood right now." She also went on about how oncology nursing has built into her as a person. She also told another quick story about when she was a teenager and was having a rough time and asked her dad "why me". He told her "He only gives those tests to those characters that he considers the strongest, consider it a compliment."

Thanks god.....I take it as a compliment! You must think I have CHARACTER.

One of Bonnie's guest today was Dr Wayne Dyer. His dad left him as an infant. His mother was not able to take care of her children. She was forced to give them up. He had to be raised in orphanages and foster care. He grew into a fantasically inspiring human being. Now, he has written several inspirational books. He made one statement that I really liked. He said, "We don't attract what we want, we attract what we are".

I will leave you with that! Those are some great things to think about......

Growing into my new self

Video link:

http://www.youtube.com/watch?v=hRPrMsAVoLQ

(I am having trouble sleeping. It is about 1:30 am. So sorry if I don't make since, seem to rant, or have errors)

Please watch the above video. It will help you understand more of what my sister and I go through. I am coming to the reality of a new self..... Maybe I am mourning my old self. I love to dance. Right now my legs don't work. I keep getting people's attempts at reassurance, "oh, you will be back to yourself in no time." The truth is, we don't know what will be my new "normal". Awareness is a huge problem with Chiari (Pronounced key-are-ee). Most neurologist have heard of it but that is about it. Another problem, it is more prevalent than MS. I bet you had never heard of it before me. Now let me tell you what I have learned. Surgery will give me some immediate relief from the pressure. However, it will not "cure" me. I will still have good days and bad days. I may still have to have further surgery down the road. We also do not know how much damage to things like my memory or leg weakness are permanent. No one will know until I recover from neurosurgery.

Now I am going to give you my opinion and my opinion only....My dad and his family were cotton farmers when I was conceived. This condition is called tethered cord/Chiari malformation. It is related to spinal bifida and is a neural tube defect. It is a know recorded fact that pesticides cause neural tube defects. What is not a know fact is that, in Arizona, it is still legal to spray cotton fields with a diluted form of agent orange (they call it something else to fool the consumers). Does anyone else find this appalling? Another thing that really bothers me, they spray the fields right next to the schools. Particles actually land on the school children. Isn't that disgusting? Next I am going to tell you about my family. I have a sister that was born with a hole in her heart. And as you know, Dondi and I have Chiari and my brother was born with kidney problems. My mom had twins that were still born in the mix (also know and recorded fact with pesticides). So eight children, one that does not have a birth defect or major problem that we know of. Then, my friend had colon cancer at 32. Another breast cancer with double mastectomy in her early thirties. A boy that lived down the street from us, was born with spinal bifida. I do not even live in the area any more. This is all the people I know of personally. Okay, that is more than coincidence don't you think? I am getting pretty fired up over this. I am getting to blow a whistle and someone is not going to like it. We have our kids to protect and future generations. I am a nurse at the VA. Do you know how many men have congestive heart failure, diabetes, and endless other health problems from agent orange exposure in Vietnam. Now we are doing this on our own soil! This should be making everyone mad! It is not acceptable....

Now that I have ranted. Please forgive me but it upsets me. I am coming into my new idea of myself. Going to NYC on Sunday. Let's keep our fingers crossed that we will have surgery scheduled when I return. My next wish list is that the surgery will help me regain strength in my legs. I want to dance with my handsome husband again! ;)

"Toughen up buttercup"

It has been four long, horrible, horrendous, hellacious, months since I got viral meningitis. I have not worked. I have not left my bed much. Really, I have been in bed about 22-24 hours a day. Much of the first 3 months, I had my head buried in the covers with the shades drawn. It took me approximately 6-8 weeks to get into the neurologist and another 4 weeks for the first migraine medications to begin to prevent some of the migraines. Other than the dr's appointments, occasional baseball game, softball game, one 20 year high school reunion for my husbands PHS class of 1990, and occasional walking/riding with my kids to and from school, my butt has been planted in my bed. I am not telling you this to feel sorry for me. No that is not it at all. I just want you to know the reality. I am still very happy. I have a lovely family. They are helpful and happy and cheerful. Their life goes on. I watch them come and go. They just do things around me. I just enjoy them more. I look into their eyes more. I enjoy their giggles more. I just love them. As I have shared with some of you, my sister Dondi, has the same illness. She had the same surgery that I am hoping to have. I think it was about a year and a half ago but I could not swear by it. Time no longer exists in my head. It is the weirdest thing. I can not tell if it has been 10 minutes or 10 hours. I guess that is a good thing. It may be a defense mechanism for when I am in pain. Hopefully that will resolve. Anyway, she has suffered for so long in silence. She is the one that gave me the advice to "Toughen up buttercup". So that is why I bit the bullet and went to the baseball and softball games, the reunion, and most recently the lake. Oh goodness am I glad I did. We just floated at the lake. We did not tube like we would usually. But the girls laid out and the little boys jumped off the rocks and swam their little tiny butts off. I have never enjoyed them so much. So when you look at my pictures on Facebook. I may look skinny. I may look like I am not enjoying myself. But inside my crazy head, I am having the TIME OF MY LIFE!