Chiari Symptoms

http://www.chiarione.org/symptoms.html

Symptoms List:

The list below attempts to put symptoms in the order of importance but, it is difficult to say with certainty which symptoms are more common than others. There have been no formal or controlled studies of the percentages of patients that suffer from each symptom. In addition, symptoms may differ from patient to patient depending on where pressure is exerted (i.e. whether tonsillar descent is causing pressure on the brainstem or not, whether syrinx exists, etc).
In general, people without herniation may not suffer symptoms associated with brainstem compression but, rather, with lack of CSF flow and raised ICP. These symptoms tend to mirror those of PTC and include some of the ones listed below.

Headache (esp. if daily or at lower back of head)
Painful tension in neck
Fatigue
Migraines
Dizziness
Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
Tingling / numbness in the extremeties
General imbalance / clumsiness
Memory loss
Restricted movement
Intolerance to bright light / difficulty adjusting to light change
Vertigo from position change or sudden standing
Difficulty walking on uneven ground / feeling ground under feet
Poor / degraded motor skills
Difficulty driving
Difficulty negotiating steps
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain
Neck spasms
Insomnia
Ringing in ears (like the tone heard in a hearing test)
Swaying
Pain when changing position
Tingling / crawling feeling on scalp
Intolerance to loud / confusing sounds
Decreased sensation to touch in extremeties
Decreased sensitivity to temperature
Pain & tension along ear / eye / jawline
Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
Drooling
Spontaneous vertigo
Hand tremors
Poor blood circulation / cold hands & feet
Sinus / mucous problems
Sleep apnea
Decreased muscle tone
Pressure in ears / ears feel stopped up
Nausea
Difficulty reading / focusing on text
Depth perception problems
Burning sensation in extremeties / shoulder blades
Menstrual problems / severe cramping during period
Fluid-like sound in ears (like water running)
Loss of sexual interest / lack of sensation in pelvic area
Pulling sensation while sitting / standing
Intense itchiness w/profuse sweating
Slurred speech
Gag reflex problems / lack of gag reflex
Pressure / tightness in chest
Loss of bladder control
Frequent urination
Dehydration / excessive thirst
Electric like burning sensations
Unequal pupil size
Loss of taste
Popping / cracking sounds in neck or upper back when stretching
Dizziness
Loss of smell / problems with sense of smell
Dry skin and lips
Sudden / abrupt changes in blood pressure due to awkward position of head
Hiccups associated with drinking carbonated beverages
Skin problems

Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints.

Final approval for surgery....

I got an email, late last night, from Dr B. in New York. The medical review board at The Chiari Institute has approved my surgery. I have to do two things before we can schedule. They require a psych review and they want another spinal tap to make sure that there is no lingering infection. Remember, I had some kind of infection on 4-29-2010? The dr's in NY thought that maybe it could have been fungal? So they want to make sure that is all gone before opening up the dura mater. So let me give you a quick and dirty on the surgery that I will have. They will be doing a release of the connective tissue at the base of the spinal cord. They will cut externally approx 2 inches. Internally, the dura mater will be cut approx 1 cm. This is much improved over just two short years ago. My surgery will be approx 2.5 hours. When my sister had the surgery, it was about 8 hours long, her external incision was approx 6 inches and internal incision was about 2 inches. Boy, what a change in two years! Imagine in another two years! I will be in a medically induced coma for 24 hours, be in the ICU for approx 3 days, and on the regular medical ward for another few days. Then I will fly home go directly into Mountain Valley Rehab. I will be there as long as I am improving daily. So, one-two weeks?

I have a call into my neurologist for the spinal tap and have an appointment for a psychologist workup in the AM. So, as soon as I have both completed, I will call to have my surgery scheduled. Woo Hoo! We are really on the fast track now!

Last night I could not sleep so I went online to search more on the diagnosis of Ehlers-Danlos Syndrome. I was able to find that the Mayo Clinic in the Valley has specialists in EDS. So, I requested an appointment. Hopefully, I can get in to see them soon for braces to keep my knees and fingers from dislocating. That will be a great relief from pain. Another upside, is that the doctors with treat my pain with this diagnosis! Yay! Sometimes it is nice to have answers to a long life of pain. I read a shocking statistic last night. 70% of suicide victims are due to chronic pain. That is a major problem. Please, if you are a healthcare provider, a nurse, or in any position to help, please believe people when they say they are in pain. When I would say I hurt, It was a 10/10. I never complained because I was always told I was just tired, I was a busy mother, I just needed to rest, I was anxious, the mind is a powerful thing, etc....So I NEVER SAID ANYTHING. I did not want the stigma of being CRAZY!

If you would like to make a donation to the Kelli Carter Medical Donation Fund, click ont he button below:

PayPal donation button!

When you click on the above button, you can make a donation directly into my medical donation account! Just figured it out. Sorry it took me so long. It is very difficult for me to read through it. Normal things take me three times as long as they used too. Many people have asked me to do this. So here goes.....

Benefit fun

Below: Todd, Memphis, and I. She is riding on my walker and loving it! (I also put the flower in her hair, too cute.)

I am not sure of the exact number but I think there was near 70 people at my medical benefit dinner. WOW! I am also not sure of the number of items I had for silent auction but they helped out tremendously. That is where I really made the most money towards my medical fund. The Tim Cox painting brought in $400.00. Amazing that those nice people were kind enough to donate it to our family. My mother-in-law bought it and will proudly display it in the house on our family ranch, Square M Ranch in Kirkland, AZ. My daddy also made a really cool wok out of a plow disk and horse shoes. People were really excited about that. My friend Christie got it and is torn between putting it up on the wall or actually using it. Maybe she can do both but not at the same time. hee hee. Here is a big THANK YOU for all the hard work of my family and friends, for all the donations, and for all those that showed up in support of our family! The Wyndham in Prescott is beautiful. The rooms have been remodeled and are really a good size. They went above and beyond to treat us like ROCK STARS! When you stay there, you get one free drink in the bar, 15% off your dinner in the restaurant, and a free real breakfast of your choice! Please support them if you have any family coming into town. They did great! They even donated 4 rooms to us. AMAZING! They are already working with Christie and Traci about a bike run sometime in October as a fundraiser. I stayed up until 2:45 with close friends chatting up a storm. However, I am still paying for that. I have not gotten out of bed much in the last 30 hours. Every joint in my body is screaming at me! That is okay though, it was so worth it!

Tomorrow is the medical benefit dinner!

PrescottNightOut.com
(A website that promotes bands and plans events. Please go check out their website and use them for any events you may have coming up)

PrescottNightOut.com is having it’s official launch party and a medical benefit for

Kelli Carter, a local VA nurse

Wyndham Garden Hotel in Prescott, AZ
Call today for special room rates of $69! But hurry, rooms will be going fast!
4499 East State Route 69Prescott, AZ 86301(928) 777-0770

Saturday August 28th, 2010

Dinner Party- 7pm-?
$20/person
Dancing
Live entertainment
Three coarse meal with soft drink Silent auction
Door Prizes
Much, much, more!

Entertainment line up…..
Cory Speight
Brooke James
Sarah McCallister
Random Temple
Ikaika Beamer (Fying in all the way from Hawaii) *check him out on YouTube
Who knows who else may just show up?

Thank you to the following sponsors!
Wyndham Garden Hotel Prescott
PrescottNightOut.Com
Windmill Boys Catering
Arizona Screen Printing LLC
High Dessert Automotive Repair
**Without our sponsors, this event could not have happened.

If you would like to donate items to the silent auction, please call 623-221-3356 or email Kelli at KNitschke@hotmail.com. As always, Thank you! *ALL PROCEEDS WILL GO TO KELLI CARTER’S MEDICAL FUND. Kelli Carter is a local VA nurse that suffers from a congenital disorder that was aggravated by meningitis and must travel to New York for pre-op evaluation and neurosurgery. This condition is so rare that it is an out-of-network surgery. We would like to thank you , in advance, for your support.

If you are unable to attend but would like to contribute:
An account has been set up at Arizona State Savings and Credit Union
Account # 450139781

1335 Gail Gardner Way Prescott, AZ 86305

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!

Small victories

I woke up at 0500, well rested! Yay! I also do not feel completely awful. It is not like I feel like jumping out of bed and running a marathon but I don't feel like hammered dog poop either. Hey, I have to take the small victories every place I can get them!

Tuesday I finally broke down and called the doctors office. Okay, being a nurse, the last thing I want to do is pester the healthcare providers and their staff. I know first hand how annoying that can be. But, I also know how awful I was feeling. So Tuesday I called and talked to the medical assistant for the neurologist. I told her "Look, I do not want to bother you or be a whiner but you need to know that I am in pain. I am talking 10 out of 10 pain and still having migraines". I went on to explain the episodes I have been having. I also explained my illness and made sure she knew that I was just there and that the dr was aware of my illness. I also made sure that she knew how serious I was. I asked her to discuss it with the dr and that if she did not feel comfortable doing so, that I would be happy to discuss it with him myself. These poor girls are about 19 years old. They are medical assistance fresh out of school and scared to death. So they are probably scared of me and scared to grow some (sorry) balls to stand up to the dr. So, two days later, I get a call back from a more mature medical assistant saying "I see a note here, have you received a call back?" So I went through the whole discussion. This time, I used her name (a trick to get people to help you). She remembered me from the office visit. My goodness the neurologist office is in Sun City. How could she forget a 32 year old with a walker that stuttered? Pretty unforgettable at this point. Within 30 minutes, the dr himself had left a message on my phone. Darn it, I did not hear it ring. So I called right back. The same, more mature, medical assistant got the dr right on the phone immediately. Can you believe it? What a turn around! He talked to me for over 10 minutes. I now have another prescription for migraine relief once they come on. Wow--now that is a BIG VICTORY! Thank god, I finally got through to that doctor. I was at the end of my rope and maybe he knew that.

Seven more days until we fly to New York. Eight days until Testing. Nine days until we have some answers and possibly have surgery scheduled.......the countdown begins!!!!

Another "episode"

My new definition of "hell on earth" is driving down our ranch road. I did get a soft cervical collar and it helps but the bumps and the two mile dirt road is awful! I wish we had a hovercraft. That would be awesome. Someone should hurry up and make one that is affordable, please! Then I could get to our little peace of heaven on earth without going through hell first. I absolutely love the ranch. It is our "home". The rain of late has really kept the dust down and filled all the water tanks. The rain was heaven sent. Soon, there will be lots of feed for the cattle. Since I have not been there much, I missed seeing all the baby cows and the beautiful sunsets. I also missed my nice bed down there. It is much more comfy then the one in town. For some reason, I sleep better there too. Maybe it is the bright stars and the fresh air. Maybe--it's just being home...

I had another "episode" Saturday night. It has been a while but I did too much. This time I was not able to get away from the kids. Usually I can get to my bedroom and close the door but this time we were in the car. I felt it coming on. First it started by a sharp pain in my right eye then I started losing my vision. I knew it was going to be a whopper. The sharp pain began from the back of my head and through the eye. It was like a knife stabbing through my head. My speech gets so bad that Justin can't understand what I am saying. The tremors look like a grand mal seizure. Silence in the car. Not sure what the kids were thinking. FEAR probably. Justin said, "do you want me to keep driving to the emergency room?". I could get "NO!" out. I do know that I do not want to go to the hospital to be treated like a druggie. Last time I went there they told me that "what I had" would not cause "the problems I have" and was treated horrendously. I would rather be nursed at home by my kids and family. I do not want to add insult to injury and then get billed for it! This particular "episode" lasted approximately 45 minutes and would scare the hell out of an adult so I am sure it scared my kids. On one hand though, I think it is good for them to see how sick I really am. It is easy to see that I try to laugh everything off and think I may just want to stay home. I don't. I want to go back to work, now, next week, next month, as soon as I can. I worked hard to go to school to be a nurse and I went to school to help people. By golly, that is what I am going to do. As soon as I am better, I am going to help people. I am not sure in what setting, but I have a new empathy for patients. God has put me through this for a reason. I can not let that go to waste. I hope my kids get a lesson out of this as well. I hope they gain a strength through me. I hope that they see how I deal with what I have been given and how I deal with life's issues. Even if one of them learns something, then I feel successful!

Don't forget that I am selling raffle tickets for an X-box 360 Arcade with 6 games. Tickets are $5 each or 7 for $20. We can do this by mail or if you are a VA employee, you can see Stephane in the ICU and Alice in Primary Care. They both have tickets. Thanks for your support!

We are also in the works for a benefit dinner on August 28th with live music and silent auction in Prescott at the Wyndham. I will keep you updated.

Another angel in my life

Karra, Kyler, Lexi, Jake, Weston in April 2010

I usually have Justin, my mom, or one of my sisters around to help me. Thank goodness. The first time I realized how much help I needed help was when I got a form from Social Security. I attempted to read it. Normally, it would be no problem. I would whip through it, sign it, and send it back in the mail. Heck, I sign hundreds of legal and medical documents, a week, at work. However, about a month ago, I got the form from social security and tried to read it. I got about a third of the way through it and realized that the words were not making sense. I could read the words but when they got into my brain, I had not idea what they meant. So my sister Kristi read it for me explained it to me. I signed it and sent it back.

Today, my friend Elizabeth took me to Costco but first she took me to the doctor's office to pick up some paperwork. This was the second time that I realized my reading comprehension difficulty. The lady behind the desk asked me to fill out the medical release form. I filled out the top. That was simple----name, address, phone, etc. Then she said "You need to fill out the whole thing." I immediately felt my heart start to pound and my eyes start to tear. I looked down and tried to read the paper. I tried three times quickly before I asked Elizabeth to help. She had no problem helping but it is my pride. I am young and intelligent but this illness has robbed me of simple tasks such as reading simple medical forms. She quickly hopped up and helped just as one of my family members would have without missing a beat. Thank goodness I am surrounded by good people!

Then we did the big-time shopping at Costco. By the time we left, Elizabeth could hardly see over the cart. We are loaded up on lunch meat, toilet paper, and cheese. My caring coworkers had been feeding us for months so I had not had to stock up for a while.

Elizabeth and I had such a good time. She is lovely and heaven sent! Next time maybe we can fit a lunch in?

Little things bring comfort

Real quick....

I just picked my laundry up to put in the laundry basket and a little metal heart fell out of my jeans that say on one side "with god"...and on the other side..."all things are possible". I had forgotten that yesterday at 4:30 in the morning I had slipped into my pocket knowing that I was going to the neurologist. I was hoping that it would give me strength to get through the appointment. For those of you that have been following me know that I have not had much luck going to doctors. So, I slipped it into my pocket and thought to myself, "God, please help me get through to this doctor today." Last Saturday someone had placed the little metal heart into my donation bucket. So, thank you to the person that put it in there. IT HELPED! I got through to the doctor yesterday! I will take it with me to New York too.

Thanks for the little things that bring comfort!

Long day in the Valley

<---(Kyler and I at the dunes 2-2010. We look so much alike.)

Yesterday started Kyler, Justin, and I started our day at 0430. We were off...The day started with an appointment for an EEG. It checks for seizure activity. We don't know the results yet. Next Justin and I went in to see the neurologist. (Kyler was sleeping in the car--it was not hot in Phoenix yet. And yes, we rolled down the windows people. He did not die. It was his choice to stay in the car. I did not forget him in there. Hee hee) What a turn around! Well first off, let me tell you. I put, what I thought was most important, on the top of my chart. I had the medical assistant copy the MRI showing "low-lying" tonsils, the speech therapist report showing that my speech problem is of a "cerebellar origin", and my emails showing I have the preop evaluation appointment with The Chiari Institute in New York. So, again, that was all up front and center for the doctor. When he walked in, he could see the walker. He could see me moving A.K.A cerebellar ataxia. And, he could here my speech problems. Mind you, this is all the symptoms that I had on May 28th when I saw him the first time. However, he was so kind. He took more time with me and gave me recommendations to see someone at Mayo in conjunction with New York. What a turn around. So, I came to the conclusion that doctors are so sick of getting patients that are drug seekers that they have to "weed" out the sick from the seekers. Unfortunately, I had to "prove" my level of illness but he did come around. At least he did. My poor sister has gone to several doctors that never did come around and have treated her as a "drug seeker" for 20 years and she just got relief in the last year. I feel so bad that people have to suffer in silence. I am telling you....I am not going through this for NO REASON. Something will come out of this. I am going to become the best patient advocate and may start a website and write a book to help others. I have so many plans for when I feel better!

So the neurologist gave me fioricet. I had requested fioricet with codeine so that it would help my head and other muscle and body aches. He did not want to give me the codeine. So, I just got the fioricet. However, that is a big score. It relieves my headaches. Now, your body only has so many pain receptors. Picture this, if your head is hurting the worst, your mind can only focus on that. When the medicine takes care of that, you realize what else hurts. So, yesterday my head felt wonderful but now my neck and back are killing me. Next appointment, tackling the codeine issue! One step at a time! Or one victory at a time....

After the neurologist, Kyler, Justin and I had a wonderful breakfast at Village Inn. Yummo! Then we went to buy Ky some school cloths. We bought him some shirts but did you know that they are making boy pants that have bling on them? Gross, they look like girl pants. They were skinny jeans and were way to girly. He would not even look at them. So he got two Hurley shirts and no pants. I guess he will just have to go to a western store to get "man" pants without bling. It was so funny watching Justin and Kyler's face. They thought we were in the woman's section when we were in the men's pants. FUNNY.

Then over to see Wessy. Weston has been staying in the Valley most of the summer. Kyler and wessy had to say goodbye. They are not close at all but they do love each other. They hung out for a few minutes, hugged, and we were off. Next stop, my old work. State Farm Insurance. Those girls are like family. After all, I worked in that office for seven years. Some of the girls came to the fundraiser last Saturday but others were not able to make it. It was nice to see them. My head was hurting! So, not a long visit.

Wow, I was already exhausted and it was only 11:30. We were off to the airport. Parked, walked, checked in.....headache, bodyache......sad...My sister Dondi met us at the airport. She was going to go through security and sit with Ky until his plan left. I had another dr appointment back in Peoria at 2:45 and his flight did not leave until 4:00. They had 2 full hours of one-on-one time. That is rare in our huge family. I hugged Ky at the security line. Dondi and Ky had a bet on whether I cried before or after the elevator. I probaly would have cried but my head hurt too bad and crying increases the pressure in your head. So, when Ky sent me a text that he was on he plane, the tears began and would not stop. I cried until we were halfway home to Prescott. This kid took care of me all summer. When I was really sick, he would get up and make me an egg every morning and make me eat it even if I did not want it. He also checked on me to make sure I was okay, layed with me, and so on. He has grown up so much this summer. Now, I love his stepmother and father. They are awesome. He is going to do awesome there. So, that makes it easier. And, I get to be the cool, fun mom now. I don't have to fight him to play his instrument and to do homework. What a relief! But, I am going to miss him! He will be back on Christmas break. Can't wait.

Long day ahead tomorrow

Kyler and Weston several years ago ---->

Today is a busy day of getting all my paperwork ready for Dr appointments tomorrow and Kyler packed. Kyler flies to Arkansas tomorrow to live with his dad. We have to leave at 0500. My first appointment is in Sun City at 0700 for an EEG. That is to check for seizure activity. Then my next appointment is with the neurologist. Yay, always my favorite----NOT! I am taking proof that I am accepted for preop evaluation at the Chiari Institute. I am also going to let him know that my primary care provider has referred me to him for pain management and that I CAN NOT LIVE LIKE THIS! It is in his hands to help me manage my pain and it is REAL, not anxiety. So wish me luck.

Then we drive from Sun City to the airport downtown Phoenix to drop off Kyler. My sisters Dondi and Traci are going to sit with Kyler and get him on the plane. He actually takes off at 4:00pm but we need to drive back to the Northwest Valley for my endocrinology appointment at 2:45pm. Fun times.

We went through all of Kyler's cloths and they mostly fit into one big suitcase. Good thing. We may buy him some school cloths tomorrow between the first Dr appointment and the airport. We just have to see how much time we have. So tomorrow comes with hope of physical pain relief but some emotional pain of Kyler moving. Please keep me in your thoughts so that I can get through my day tomorrow!

***Thanks to the multiple people that have put donations in our account at the credit union!!!!

Fantastic fundraiser results

The bowling and baked good fundraiser was fantastic! So many people showed up that we filled the entire bowling alley. I think the owner was shocked and the bartender was really happy, to say the least. I think she would have had, maybe, eight bowlers from 2-5pm if we would not have taken over. There were so many baked goods that we covered the entire pool table and another table twice. I got to bring home some peach cobbler and I think it may be the best I have ever had!

It was difficult to be upright and to talk and pay attention for three hours straight. So if I talked to you, I may not remember. I think my memory problems are a defense mechanism from pain. At one point, I was choked up. People continue to be so generous. Thank you just does not seem to be enough but I am going to say it anyway....THANK YOU. I really appreciate everyone that took time out of their weekend to come. Some drove a great distance. My sister and her family drove over 8 hours each direction. Others came up from the Valley. However, I don't think they minded getting out of the heat. Many, cooked the lovely baked goods that were so yummy and 100% profit for our fundraiser. Others bowled their little hinney's off. Some just came and donated money to our family. We thank all of you from the bottom of our hearts. We raised more than expected and enough for our next flight and most of our hotel stay (14 days). I am off to my first appointment on August 22nd-25th. So wish us luck! Hopefully it will lead to some much needed relief.