I made a YouTube video

http://www.youtube.com/watch?v=k2_SAbM7xqI

I made a YouTube video if anyone wants to watch it. The link is listed above. Maybe it will help with a little perspective on what really goes on at home. Yes, I may look good with make up and hair done but it takes all my energy to do so. It also hides what is really going on inside my body. I want to be optimistic but here it is at 0330 and I am still awake with body aches, a headache, and nausea. I really hope it gets better. :( A few things are definitely better like my speech and my walking. It's the aches, pains, headaches, migraines, nausea, insomnia, and cognitive function impairment that I'm hoping improves. They keep saying it will and I keep pushing along.

Justin is down with the stomach flu today. I have never seen him so sick. Hopefully it will pass as fast as it came! Things WILL get better....I am sure of it!

Physical therapy/ package for the troops

I have had two sessions of physical therapy now but missed today due to having the stomach flu yesterday. Throwing up with a big gash in your back is NO FUN! However, my second session of physical therapy was awesome. They used a warming pad and stimulation to get me started. Then I did nearly a mile on the stationary bike to warm up my body. Next, they had me doing some very light weights while sitting on the exercise ball. Finally, we did some more stretching and then they iced me to go home. I am really looking forward to building my strength and am excited to get some endurance back. I still get tired just walking 100 feet and have a hard time walking through stores, right now, but it is improving everyday!

Weston and I picked a stocking from the "senior Christmas Angel" tree. I gave him a choice of a child or an elderly person in need. He chose the senior. So we bought them some wood craft sets. I want to teach my kids that no matter how bad you think you have it, someone else has it worse.

I also got an address for a friend that is serving overseas. There is no way that it will make it by Christmas but I want to put a package together to send to him and his fellow troops. I will be using a flat rate boxes. So, if anyone (in the Prescott area) wants to donate anything, write any notes, draw pictures, socks, mints, gum, baby wipes, flavored water packs, etc, please let me know. I will probably be sending it in the next week or so. These men and woman are away from their families for the holidays and are protecting our freedoms. They also LOVE to get mail! It means so much to get a little taste of home.

I hope everyone has been touched by the spirit of the holidays. Remember, even if times are tough, you can always reach out to help others. It is amazing how blessed you will be in doing so!

Gaining ground

This is a view of a tethered cord (The connective tissue at the base of the spine attaches too tight before you are born. It is closely related to spinal bifida.)


I am feeling better and stronger day by day.

Yesterday was the first post-op appointment with my PCP. First off, the girls at the front desk had shock on their faces when I walked in, unassisted! "You look great. That is really amazing!" Then I asked the medical assistant to measure my height. I have gained 1.5 inches back in height. I have gained just over 2 lbs. Which is pretty amazing since almost everything taste better since surgery and I did eat an entire pecan pie, that my mom made, and Thanksgiving was last week. My speach is pretty clear now and my neck has full range of motion. Overall, she was pretty happy with my healing, so far. My next appointment is in two weeks and she said that I may be able to drive then!!!!!!! I don't even know if I remember how. It has been 7 months! I am so excited. Freedom, sweet freedom!

I do still have daily pressure headaches and am still in bed most of the day. I am still taking the medicine for altitude sickness. Hopefully that will continue to work. The fatigue I have is from the surgery and the Ehlers-Danlos Syndrome. So, that will not be fading completely. I am slowing trying to build up my core muscles by sitting to the side of the bed and sitting up on the couch. Slow but steady. I will start my physical therapy on Tuesday. I am excited to get some endurance back and see what kind of excercise I can do.

Detethered 11-16-2010

We made the exciting trip to New York City and my surgery went pretty uneventful. When I woke up, I did not have a headache! That was the first time that I can remember not have a headache, possibly in my life. I had to lay completely still for 24 hours. Justin was able to stay in a fold out bed/chair, the entire time. Thank goodness. The caliber of nurses are no where near that of the nurses that I work with! And that is no joke! One nurse ran and antibiotic without running it through a pump, without a saline flush, and then went to lunch. Thank goodness, I am smart enough to stop it prior to air running into my veins. I could go on and on about that but the Doctors were awesome. Now I understand when Dr B gives me a hard time about being a nurse. The first time I told him I was a "bossy nurse", he said "you don't even have to say those two words together".

I was released from the hospital a full three days early. Then we flew home two days earlier than planned. My brother, sister, and Justin were with me the entire time. I was doing quite well walking around the room. My speech was clear, my shaky booty was gone, I could turn my neck from side to side. Yay! My cognitive function has not come back completely yet. Time....Kelli....time! I was even able to walk down the hall of the hotel without any assistance. Now I just need a cane instead of a walker or wheelchair. That is a huge relief. We were not sure how much of my leg weakness was permanent. The neurogenic bladder is permanent. I was pretty sure that would be the case anyway. So, all-in-all, I was improving everyday in NYC.

Then we flew home. Keep in mind, New York is Sea Level. Then the plane is pressurized. We stayed in Phoenix for a little bit then made the trip up to a mile high. WOWZA! The mountains from Anthem to Sunset Point I cried my eyes out. It felt like my back was going to blow out and my head was going to pop right off. The next day, Justin went back to work and I was home alone. I had nausea, diarrhea, headache, speech problems, pretty much everything I had before surgery. I cried on and off all day. It was horrendous. I waited another day or so and called the neurosurgeon in NYC the day after Thanksgiving. Can you believe he was there and got right on the phone? Dr B rocks. He asked me a few questions, I joked with him a little, and then told me what to have my primary care physician order for me. I called my PCP, on call, and they were kind enough to call it in. I guess I am getting better everyday but it is hard for me to see. I have been in bed for three days straight (plus the seven months prior to surgery). My head has constant pressure. The speech has cleared up. I have some shaking. I am not sure if it is the medication, the fear that the surgery has not made me completely better, or being stuck in bed for the holidays, but I am very sad right now. My hubby and the kids put the tree up and decorated it today while I layed in bed. I have missed out on so much this year. I hope this is just the beginning of the healing and I will be jumping right out of this bed soon!

Quick Post-op update

Woke up from surgery without a headache! Got out of the hospital three days early and flew home two days early. I was doing great in NYC. I am home now but I do not feel good enough to blog. I think the pressure change of being a mile high is doing me in. Hopefully in a few days, I will feel great and will update you. Otherwise, everything went great.

:)

I have CRS "can't remember sh*t"

Yesterday I got my my results from my cognitive functions tests. If I see something, I remember it. If you tell me something 5 times, I can only remember half and after a half hour I forget half of that. The conclusion is, that I have to write EVERYTHING down. Another weird thing is that I normally am left-brain dominant but right now I am working more with my right side of the brain. I can't figure anything out but bring on the crafts!

4 days until we leave to New York and a week until surgery!

Countdown to tethered cord release surgery begins!

8 days until we fly out, then one day of rest, another day for pre-op evaul, then tethered cord release surgery!

I have a roller coaster of emotions. I am excited but scared at the same time. The excitement is for the hope of waking up from surgery with relief from a life of constant headaches, low back pain, nausea, dizziness, neck pain, etc. My sister, that had the same surgery, just two years ago, said that she felt so good when she woke up. She said that she had the pain from the surgery but the relief from the headache and other pain was so substantial that it was unbelievable. We have had pain all of our lives that we are somewhat used to it.

The tethered cord release surgery involves going into my lover back, entering the dura mater (the thick covering of the spinal cord), testing the actual neural tissue to make sure that they do not cut that, and clipping the connective tissue. That is right, they will be severing the connective tissue that connects the base of the spinal cord to the bottom of the spine. There is no need for it to be connect in adulthood. This is being cut in hopes that my brain will float up and will no longer be pulled down into my spinal column. Then the cerebral spinal fluid will be able to flow more normal. After the surgery, I will be in a medically induced coma for 24 hours, be in the ICU for 3 full days and on the medical ward for 2-3 days. My sister, brother, and Justin will all be in New York with me. Then Justin and I will stay a few more days to make sure there are no further complications and fly back on Thanksgiving day. In the future, I will be closely monitored to see if my brain settles back down. If so, the brain surgery will be needed. Most Chiarians with tethered cord have to have both the tethered cord release and the brain surgery. Justin and I will be going for follow up once a year for the rest of my life or until they have an office out west. So, hopefully we will get to see the Statue of Liberty on one of those trips.

The surgery is just a symptom control. At this time, there is no cure for Chiari.

Get out and Vote!

I am so thankful that I get to go out an use my voting opinion today! I am so excited about a few major issues we get to settle. But, what I am most excited about is the end to the nasty, never ending political ads and phone calls to my flippin cell phone! Where do they draw the line anyway?

Last night Weston was not able to eat dinner. He complained about his throat hurting so bad that he was unable to eat. When I looked at it, it was red with some white marks on it. So, early this morning I was on the phone with the pediatricians office. He is seven years old and seems to get strep throat about 4 times a year. Poor baby! Thank goodness I have good friends that will pick us up and take us to the dr at the last minute.

Here I sit and think about how god has his hand in everything we do. I promise that I am not a very religious person but I have seen really impressive things in the last seven months. Two weeks ago I had lunch with my only cousin on my mothers side, his wife, and their adorable four month old baby. It was a wonderful time. When we were together, my cousin mentioned that his step-sister had just become a pediatrician and gotten a job in the area. When Wes and I were in to see the doctor this morning, it was a young, new pediatrician. I just had a funny feeling so I asked here name again. She kind of looked at me funny when I asked if she was Eddie's step-sister. Weird, but it was her taking care of my Wessy this morning. When I sent a text to my cousin, he sure thought it was funny too. Small world out there. Mind you, none of us grew up in Prescott!

I hope you all have exercised your right to vote or plan to after work! I am anxiously awaiting my husband to get off work so that we can make the crazy 45 minute trek to our polling place. I will have to take a zofran for the road that we have to drive to Whilhoit. Then all the reading, I am not looking forward to that. Good thing, I have already pre-read all the propositions! Yay!

Tethered cord causing nerve dmg/ Fibromyalgia & chronic fatigue connection to Chiari

My sister sent me this new site that has so much helpful information on it. It has this question and answer session with doctors and one of the neurosurgions is the surgion doing my surgery in NY, Dr B.

http://chiariconnectioninternational.com/doctor.php

Here is some of the info I found interesting:

Fibromyalgia, Chronic Fatigue, and CM

Fibromyalgia (FM) and Chronic Fatigue Syndrome are "wastebasket diagnoses".

In a nutshell, they mean:

1. You have pain all over (FM) or you have a low energy level (CFS), in the absence of an identifiable diagnosis.

2. For convenience reasons (and to give the patients some sense of closure), we give these conditions a label (FM and CFS).

Many disorders can cause symptoms which mimic or overlap those of FM and CFS. If you have multiple metastatic lesions in your bones, you will hurt all over. If you have advanced lung cancer, you will be very fatigued even when coping with the normal activities of daily living.

Chiari I Malformation has a clinical presentation which can possibly involve several symptoms, besides the classically accepted Suboccipital pressure headache aggravate by exercise and straining. Diffuse body pain and fatigue are among the symptoms of the CMI spectrum. The electrical circuitry behind these FM-like and CFS-like symptoms is poorly understood, but they indeed improve in several patients after uncomplicated surgery, to various degrees.

The controversy about FM, CFS, and CMI started a decade ago, when the official ranks of organized neurosurgery had the impression that some physicians were overdoing posterior fossa decompression, to provide a tentative "cure" for FM (and/or CFS). The high profile of some media exposures (a 20/20 segment, and an article on the Wall Street Journal) added fuel on the fire. The result was a backlash which affected some professional carriers (with sanctions), put FM and CFS in a murky and off-limit perspective to the American neurosurgeons, and caused a steering towards the right in the overall surgical management of CMI (with most of the experts shifting towards highly conservative criteria for diagnosis and treatment).

Attempts had been made recently to restart the analysis of this highly charged problem. NFRA (National Fibromyalgia Research Association) is the ASAP equivalent for FM. Like ASAP, they have an annual meeting. Dr Rosner (who is back to surgical activity in NC) is a frequent presenter at the NFRA meetings. On occasion of the last NFRA meeting, the preliminary results (meta-analysis) of a study conducted by a group of scientists from the University of Seattle WA (led by Dr Ellenbogen) have been presented; the preliminary data suggested that in their patient population there was an increased association between FM and "borderline CMI " (= minimal tonsillar herniation).

Bottom line:

The relationship between FM, CFS, and CMI is very complex, poorly understood, inadequately investigated, and highly controversial. The topic has been a taboo for neurosurgeons during the last decade. Recently, the problem is being reapproached, in a less emotional and more logical manner.

Paolo Bolognese, MD
*********************************************************

If we wait to have surgery for Tethered Cord Syndrome (TCS), will we have nerve damage?
TCS acts by pulling downwards the inferior end of the spinal cord with a tight (and sometimes thick) filum terminale (which is the rubber band anchoring the spinal cord to the tailbone). The downward pull distorts the area of the cord called conus, causing lower back pain, leg pain, feet numbness, urinary disturbances, and bowel problems.

The natural history of the disease sees the filum pulling, and the spinal cord giving, over the lifetime. The growth spurts of adolescence cause cyclic acute flareups of the TCS symptoms and signs, with severe "growing pains", and bladder and bowel "accidents". When the skeletal growth ends and the subject enters adult life, the balance between tight filum and cord is played over a slower pace, with a slow clinical progression of the signs and symptoms.

In this adult phase (on the grounds of our experience) there is a point of no return, beyond which permanent damage can be left behind even after surgical correction. The exact timing of this point in time is still unclear, but some warning signs are already emerging:

- The urodynamically confirmed diagnosis of neurogenic bladder; - EMG changes in the legs (when not connected to other pathologies); - Foot drop (even when only mild).

TCS can affect the bladder in two ways:

- Hypoactive bladder (with urinary retention) - Hyperactive bladder (with urinary frequency), often mixed with dyssinergia (the bladder contracts without proper coordination). Hypoactive and dyssinergic bladders can lead to hydronephrosis (= a dilation of the major urine channels within the kidneys), which can ultimately cause renal insufficiency.

Our experience is based on a quite large patients' basis. 220 TCS surgeries have been performed at TCI, during the year 2006 alone. During the same year, many other patients have been diagnosed at TCI with milder forms of TCS, but not treated surgically. We have also observed that the majority of the TCS pts diagnosed at TCI had an associated connective tissue disorder (like EDS or Marfan). Patients with a diagnosis of connective tissue disorder (and specially people who underwent craniocervical fusions in the past) need to be screened for TCS.

Paolo Bolognese, MD

Fast and friendly service at a doctors office!

In my email confirmation, it stated that I needed to have an EKG, echocardiogram, pulminary funtion test, and a cardiac function test completed within 30 days of surgery. Luckily I just had an echo done. So, I called my new healthcare providers office yesterday. When I spoke with the nurse, I told him what all I needed and that I had an appointment already for the 3rd of November. He quickly said, "Lets get you in sooner so that we can make sure everything gets completed. Can you make it in tomorrow at 9:30?" Nice! So, this morning, I went into the office. They were able to complete the EKG and the pulmonary function test right in their office. When I met with my nurse practitioner, she had already scheduled my cardiac stress test. I have to do the chemical stress instead of the treadmill since I have trouble walking. I will have that completed on the 3rd of November, next week. Also while I was in the office, they typed up a letter for my work for my extended leave time. I have NEVER had such great service from a health care provider! They are kind and take the time to listen and look me in the eye when they are discussing my care with me. Just awesome! The nurse faxed all my paper results to the Chiari Institute before I left the office. I just can't say enough nice things!

Get lost in the beauty

‎"Connectors are exceptionally kind and loving people...They always find something to appreciate. They can get lost in the beauty of a starry night or a frog on a lily pad. They see beauty in children, and they find a natural radiance and splendor in the aged. They have no desire to judge anyone in low-energy negative terms, and they ...know that the all-creating Source brings only beauty into material form and so it is always available." - Dr. Wayne Dyer

I, thankfully, know a few "connectors" and strive everyday to become one myself!

Surgery Date Confirmed

I finally got the email confirmation on the date of surgery- 11-16-2010! Wow, that is so soon. I am excited, scared, and overwhelmed! I have so much to do and so little time. I have made the hotel reservations, car rental, and am working on the air line tickets. There are tons and tons of pre-op test that I have to have done between now an then. Hopefully, I can get them all done! Now I need to work on the schedule for Weston. My parents are going to take turns staying with him. Then my sister and parents are going to also take turns staying with me. It is going to be a long time before I can be left alone after the surgery. We will be in New York from approximately 11-13-10 to 11-25-10. Then I may be going into the Mountain Valley Rehab Center when we return. Happy Thanksgiving to us! We will have a lot to be thankful for this year!

My brother, Scott, and Sister, Kristi, will be joining us in NYC. Thank goodness, Justin and I will need all the support we can get!

We have a date!

I have been very frustrated. I did my part to get my psych evaul done the day after I found that I was approved for surgery, I got my lumbar puncture as soon as possible, and had all the results faxed right away to the scheduler in New York. Then I left two separate voicemails and sent two emails with no response. Then a week ago I emailed the doctor directly and got an answer right away. Then when the lady tried to cover her bum, she stated that she did not get the psych evaul that was sent nearly 6 weeks ago. Then Dondi resent the evaluation along with the original fax confirmation a week ago. I finally got an email from the scheduler that she had received everything and that it was in my file this past Monday. I quickly emailed back that I would be looking forward to hearing from her. I had also found out that my case worker with social security had requested my records three times. When I called the office, I found out that it was the same lady that had not returned any of my prior voicemails or emails. Imagine my surprise.... No real surprise, I am being facetious. Yesterday, Three days after I had received an email from the scheduler stating she had everything, I still had not heard from her. So, I sent a very FIRM email. It said something to the fact that I have moved very fast on my end to make sure that everything was done, that I had a child that I had to plan for and that my whole family is waiting for her to contact us. I said that I felt that everything had stalled on her end. Guess what? I got a call bright and early this morning! My unconfirmed surgery date is 11/16/2010. The scheduler was going to check with the operating room and send an email confirmation on that date. At lunchtime, I got an email. I was so excited. So I quickly opened the secured email. It is a medical site that you must log into. When I opened the email, I was shocked to see that the email was for another patient. It had her name, date of birth, surgery date, type of surgery, and much more. NICE, REAL NICE! I emailed right back to let her know of the error. Wow, she actually responded to an email asking me to delete the email but never sent my email confirmation. I only hope that my info was not sent to the other patient but if I were to guess, I bet it was! Oh well! Yay--I am getting surgery.....Happy dance! Lets party like it's your birthday! Shake your booty!

Rhino, not hippo!

So the neuropsychologist said he would put me on the top of the cancellation list for the full cognitive function testing and he did. I saw him the day before yesterday and yesterday I got a call that there was a cancellation for this morning at 0800. Wow---that is fast! I would have otherwise had to wait until January. So, this morning my mom and I woke up at 0500 and headed down to Sun City for an 0800 appointment. The testing was so intense and brutal! It was nearly four hours of testing. I was so exhausted when we left that I slept all the way home. It was interesting. They did a lot of different things but one funny question that I remembered was "What do a fly and a tree have in common?" I still do not know the answer. Then at the end, she would give me three letters to remember. IE: A,X,O then give me a random number like 93 and have me count backwards by 3's for a set period of time. That was hard. I had a really bad migraine when I was finished. These are just two examples that I can remember. One major problem I continue to have is that I say something out loud like "hippo" when I know it is a "rhino" or "harmonica" when it is an "accordion". I know what the item is but the wrong word comes out. The tech was able to direct me when I was wrong but this is a major issue if I am working as a nurse and teaching someone about new medications. Patients would not know when I make those mistakes. This could cause major issues.

Needless to say, this is going to be an early evening!

Yay for good dr's

Yay for good doctors! When I was at my neurologist last, I asked for a cognitive function evaul so that I could have a before and after surgery comparison. So, I saw a neuropsychologist today for cognitive function consult. The actual testing will take 4 full hours! Today he did about an hour of discussion and some testing. He was so AWESOME! It is so weird to go in to a dr that is close to my age. The cool thing is that I know that he has not been out of school for too long but he is still fresh in his schooling and has been out of school long enough to be into the full swing of his practice. I also noticed today that the office I went to (a different division of my neurologist office ANI Arizona Neurological Institute). I also noticed that they had neurological Balance practice and neurological Pain control in that same office. Holy Moly, is that a God send or what? I could use both of those. The doctor was so kind. He said that they were booked up to January for the 4 hour long test but that he personally wanted to see that I was tested prior to surgery. Usually techs do the testing but he wants me to call when I have a surgery date and he will personally do the testing on a Friday. He wants to see the results. When we were finished, I asked that he send the report to a few places. He said, it was not problem and he would make sure it was sent. I am always concerned that people may think that I am faking. He then said, "This is not something you can fake". Praise the Lord for sending me to a kind and understanding doctor! Maybe things are turning around. :)

As far as New York, they have all of my paperwork and that is confirmed. Now I am waiting for the same lady to call me to schedule my surgery. The same lady that has never returned an email or voicemail. The same lady that has never sent medical records when requested. I am keeping track. Last week I finally emailed the dr in New York directly and he emailed me back within a half hour. The lady had to cover her hind end and said that she had not received the pscyc evaul. Bull Honkey! When was she going to let me know? Never! I have the fax confirmation and was sure to send it when my sister refaxed it. I strongly dislike when people can not do their jobs! Hopefully she will call me tomorrow by 11am our time in AZ. If not, I will be on the phone. She only works until 3pm in NYC. I guess I will have to be a PIA (Pain in the ace) until she schedules me. So darn frustrating.

My Weston started a new 2nd grade class at Miller Valley today. His new teacher is so fun and exciting. Weston made "four new friends today". Although he can not recall any of their names. He truly is my child. I hope this school works out for him. I do not want to stifle his little happy, exciting, theatrical personality just because a teacher does not want to teach. It is aweful that some teachers just want to sit and play on a computer all day and have the kids work out of a workbook. Another sad thing is that when I called the principal, he was not really that willing to help. We had to split up my step-son and my son. They walked to and from school together often. Hopefully we can rejoin them next year. In the meantime, I hope he flourishes in his new school!

Have a wonderful week everyone! Hope to hear from you soon!!!!!

Why New York?

It is really this simple, they are the best neurosurgeons in the world! If you are going to have someone cut the connective tissue at the base of your spinal cord, do you want someone that is just OK or do you want the best? Well, I want the best. The Chiari Institute has done over 3000 surgeries! They also do research on what causes Chiari, what is related to Chiari, genetic links, etc. I also do not have the "normal" Chiari where the brain is too large for the skull. My Chiari is aquired. No other place in the world recognizes that. What that means is that my Chiari was caused by something else. In my case, tethered cord. My spinal cord is attached too tight. As I grew, the cord pulling down pulled my brain down into my spinal column.

My problem at the base of the spinal cord needs to be fixed first. Then eventually, I may need brain surgery. If I were to be treated at Barrows, they would only want to do the brain surgery. If they did that first, without fixing the cause of the problem, I would get worse.

My family and I have chosen to go with the best for a surgery that is so serious. I hope this answers the many questions I get on this. :)

Scentsy Fundraiser for Kelli Carter’s Medical fund

Unique Scentsy warmers use a low-watt bulb to melt specialty formulated wax slowly, maximizing its fragrance time. With no flame, soot, or wick, the Scentsy wickless candle system is a safe way to enjoy more than 80 Scentsy fragrances.

Ordering is as easy as 1, 2, 3…

1. You can shop online at https://fers.scentsy.us/Home. You simply go online to order and it will be shipped directly to you. This is perfect for my out-of-town friends and family!

2. You can use a catalog. We have plenty available.

3. You can call in your order to Jennifer at 928-710-2124.

*Don’t forget to mention that this is for the Kelli Carter fundraiser!
My favorite scents are pumpkin roll (perfect fall and holiday scent), sugar cookie, and honey pear cider. The scents last so much longer than a store bought candle. I have used mine for 3 weeks and it has not diminished at all and my whole house smells like pumpkin roll. YUMMO! These items will be in prior to the holidays so remember Scentsy wickless candles make the perfect gift!

*25% of the sales will go into Kelli Carter’s medical fund for an out-of-network neurological surgery in New York.

Combine and save:

A) Scentsy Full-size System
3 Scentsy Bars of your choice, plus 1 full-size Scentsy warmer
MP-SS13 $40 ($5 savings)

B) Scentsy Mid-size System
3 Scentsy Bars of your choice, plus 1 mid-size Scentsy warmer
MP-MS13 $35 ($5 savings)

C) Perfect Plug-Ins
6 Scentsy Bars of your choice, plus 2 plug-in Scentsy Warmers
MP-PP26 $50 ($10 savings)

D) Perfect Scentsy
6 Scentsy Bars of your choice, plus 2 Full-Size Scentsy Warmers
MP-PS26

*This order will close on 10-31-10

No one thing defines me!

Let me tell you just a few things that I have overcome in my life, so far (in no particular order):

*Being born the youngest of 6 children
*Marrying my high school sweetheart way too young
*Divorce
*Abusive relationship
*Single motherhood
*Rape victim at the age of 14
*Nursing school survivor (Which is complete hell anyway but did it as a single mother of two and working made it hard. I also was the Student Nursing President because I felt the need to punish myself that much more. Thank goodness Justin helped me out)
*Worked two years of night nursing (all while fighting fatigue, pain, and headaches)
*Have had headaches for 32 years, body aches, and fatigue my entire life.
*Chiari=low-lying cerebellar tonsils= hindbrain descends into the spinal column
*Ehlers-Danlos Syndrome=Connective tissue disorder that makes your joints painful and dislocate. It also makes my skin hurt. There is no other way for me to describe it
*Tethered cord=the connective tissue at the base of the spinal cord is attached too tight. It is related to spinal bifida and is a neural tube defect.
*Neurogenic bladder=due to the spinal cord being pulled down to tight, spinal cord damage has occurred. This is permanent nerve damage causing urinary problems.
*I have lived through years of doctors tell me I had anxiety. Guess what? They are right, it makes me anxious that they never found what was wrong with me until I was 32I was born with all of this!
*Had to deal with "The mind can be a powerful thing". AKA, "it is all in your head" It is in my head, my brain is bashing my skull! They were right, just not in the way they thought!
*Had to deal with the feeling of having to prove myself over and over to the doctors even after I just returned from NY


Am I going to let those things define me? Hell no! But they sure have made me who I am today. I am a smart, confident, mother, sister, daughter, wife, and nurse. That is who I am! I stand tall (Although, a little shorter than I used to hee hee). I may have an illness that is knockin me down but it will not keep me down. Look out world, you will not know what hit you when I feel better. I am going to be shouting from the rooftops. Our healthcare system needs to be re-educated. It is clearly a deficiet when it comes to Chiari. There needs to be re-education in the Emergency departments, primary care, radiology, hospitalist, neurologists, and so on.

Thank you for taking the time to read my blog! I love hearing from you. Go out and have a wonderful week.

“Loving people live in a loving world. Hostile people live in a hostile world. Same world.” -Wayne Dyer

One person may just make that difference

Today I sat with doctors, nurses, friends, family, housekeepers, police officers and so on. They were are all so touching. I can not believe how many people care about my family! One Doctor may have said it best, he told me that he had never heard of Chiari prior to me (Other than a paragraph or so in med school). He said that he was watching Mystery Diagnosis and saw an episode with a ER nurse that had something similar to what I have. He, along with many others also told me how they follow my blog regularly. NICE! Maybe I CAN make a difference. One person can spread the word about Chiari.

Today my friends put together a huge fundraiser at the VA. They even had a band made up of VA employees. They ROCKED the house too. The food was fabulous. There must have been 150-200 people that come through the theater for lunch. It was fun to see my coworkers. There were 50+ items donated for the silent auction. Many of them handmade and beautiful. Again, so touching! They even brought all the left over food to our house.

My support system is the most amazing in the world! I love you all. Thanks for everything you do. My kids are already eating the cookies.....

What a difference a healthcare provider makes!

YAY! I went to my new heathcare provider today and WHAT A DIFFERENCE A HEALTHCARE PROVIDER MAKES! Even though I am a medical "train wreck", she made me feel so welcome. She talked to Justin and I for an hour. She ordered a referral to see a cardiologist to see what type of Ehlers-Danlos Syndrome I have. She did not shut me down and ignore me as my prior provider did. She was genuinely concerned about me as a human being! She also order blood work and they had a lab right in their office. Amazing, just amazing. She even asked Justin how he was handling me being sick. She prepared us both for the possibility of me not returning to work. She made sure that I had a handicap placker for my car, which I had to practically pull teeth to get at my prior doctors office. She went over all of my medications and did not want to change anything that I am currently taking and discussed adding other things in conjunction to keep me out of the ER on the "bad" days. Wow--she actually listened to me! And yep, she did it all in her pink cowboy boots baby! Gotta love Prescott!

So we were in and out of the office, wait time, lab work, requesting prior records in less than an hour and a half. That has to be some kind of record. And, they did not treat us like we were stepping on their toes....Pretty cool stuff!

Prayers are being answered! The little things I tell ya!

BBQ fundraiser at the VA in Prescott

My lovely coworkers have put together a fundraiser this Friday 10-1-10 from 11am-1pm. It will be at the theater building of the VA and will be $10 a plate.

You will have a choice of two hot dogs or a burger, watermelon, baked beans, chips, a cookie and a choice of soda or water.

There is also a silent auction with 50+ items and a 50/50 raffle (The winner of 50/50raffle gets to keep half the cash raised from that raffle)

**If you are in the Prescott area Friday, please come by to join us!

All the proceeds will go into my medical fund for my out-of-network neurosurgery in NY.

If you are unable to attend but would like to donate, simply click on the button below:

VOTE YES ON AZ PROP 106

Attention Arizona voters: Make sure you go out and use your voting voice and vote YES ON AZ PROP 106! We need to stand up and reject Obama Care. The government does not need to be directing healthcare! If they had their hand in it, I would not be getting this much needed surgery I am getting! PLEASE VOTE YES ON AZ PROP 106.

STAND UP FOR OUR RIGHTS VOTE YES ON AZ PROP 106. Keep our healthcare in the hands of the professionals.

If you would like to read the bill, you can go to this website for a summary or the complete bill:
http://www.azhealthcarefreedom.com/why-freedom/

Proposition 106, the Arizona Health Care Freedom Act, will amend the Arizona Constitution to protect 2 rights:

1. That all Arizonans have the right NOT to participate in any health care system or plan, without penalty, fine, or tax. In other words - no government-forced insurance
2. That all Arizonans have the right to spend their own money to obtain legal health care services.

All clear for surgery!

The weather changed. It gets a little chilly at night now. I spoke a little too soon about being pain free. The cold weather and my body do not like one another.

So yesterday we woke up early and headed to the Valley. My body did not want to move. The warmth of the Valley was inticing. Luckily it was considered a "cool" day for Phoenix and never hit triple digits. I did not realize it but I was a figiting mess. Every song that came on the radio almost had me in tears. I was an emotional wreck. Justin said, "you are nervous". "No I'm not." Was my first reaction. Then the more I thought about it, the more I realized that he was right. After the fiasco with my PCP. When we got to the office, there was a new and cheerful receptionist. Then the neurologist was wonderful. The lumbar puncture results were clear and were faxed to The Chiari Institute. I have called and left a message for the surgery scheduler. Now it is in her hands!

One decision that I made many years ago was to purchase private disability insurance. When I was 19 years old and bought my first home, I purchased the policy. No matter how poor I was, even through nursing school, I always kept the policy. It may have been the best things I have ever done. So, If you do not have private life insurance or disability insurance, go get it today! It may not be much but it is going to keep us from losing our home, car, and will keep our family fed while I am ill and unable to work. As many of you may or may not know, I worked for State Farm for 10 years. If you do not have an agent, feel free to call my friends at Rick Hobbs agency 623-561-8400. No, I am not getting anything out of it. I just want my family and friends to protect themselves!

*Strength comes from struggle, weakness comes with ease...

Beautiful mess

Weston started gymnastics at the YMCA. I have been home and in bed for 5 months now. I do not want him to miss out on life because I am sick. He has asked me for a while now if he could join gymnastics. So I decided, once again, to "toughen up buttercup". I called and it really is not that much for one child to be in gym so he will be going once a week. I figure, I can be tough once a week. And, if not, once in a while, he could miss. So...he got on his bike and I got on my electric wheelchair and we where off for our approximate block and a half ride. We had to go a little early to fill out the papers and get him to class on time. Getting in the main building was no problem. Then I had to work on the paperwork. As I have discussed before, reading is one of my big problems. I have to really focus and it is hard for me and makes my head hurt. Once that was finished, we moved to the gymnastics building where we ran into hurdle number one, the wheelchair does not fit into the door. It's only a little hurdle, I just can't walk long distances or stand for long periods of time. Then hurdle number two, no one was at the desk to help me. So we stood for about 10 minutes with no one to help me...Oh my head started to ache. Weston and I just sat down for a few minutes and waited. Then when it got closer to his class time, I went and stood at the desk for another five minutes. Then, an angel rounded the corner. My new friend Julie. She is a mother and PTA member at the boy's school. She is also planning meals for our family and is actually bringing us dinner tonight, infact. I must have had that look of shear desperation in my eyes. I told her that it was Weston's first time at gymnastics and that I may have bitten off more than I could chew. She quickly went back to get someone to help me. Oh my, I was so thankful. I can not believe how people just show up at the right time to help me. We got him signed up and he enjoyed it so much! Thank you Julie!

Then we rode our little rides home. I decided to take a short cut which lead to hurdle number three. I usually go through my neighbors driveway. It is much less steep then mine and he does not mind at all. I have gone up my driveway before but something must have changed? Maybe the seat has moved or I had too much stuff in my purse? (evil laugh) Up I start and OH NO I START TO TIP! WTH? "WESTON! COME GRAB MY PURSE! I HAVE TO TURN AROUND FAST" Weston ran over so fast and he was so scared. He grabbed my pursed and said "Mommy, you are going to fall" I had to grab myself with my left leg and it jammed the crud out of my entire back and neck. So, I may have spoke too soon about having a pain free week yesterday. All I could think of was Justin was on his way home and have to peel me up out of the bottom of the drive way. So my adrenaline got me out of the situation and Lexi and I had a good giggle out of my "blondeness" afterward. When Justin got home he just kept telling me to "go lay down and you are a mess". Well, I am a beautiful mess and at least I can laugh at myself and that means a lot. I am sitting here typing this with the biggest smile on my face. I just love it!

Pain free week!

The pain has been lifted over the last week....Thank goodness. I have low energy but the pain is not a constant thing this week! YAY!

I called Banner's lab this morning and they told me that the results should be done on my lumbar puncture in two weeks. I have a neurologist appointment in two days. That is pushing it exactly to the day of two weeks. Hopefully my results will be there but I will not hold my breath. This will be my first appointment with the neurologist since my New York visit. Hopefully it will go better than the visit with the primary care visit. I am sure it will. :) I will be sure to have all of my paperwork and correspondence with The Chiari Institute stating that they have approved me for surgery. Maybe he will be more help with treatment for the Ehlers-Danlos Syndrome too.

I hope everyone is having an awesome week! I have not thanked you in a while! Thanks for every one's support. Thanks for your friendship. Thanks for your love. Thanks for your donations and most of all....Thanks for being you!!!! I have the most awesome support group!

Disappointing doctor visit

Wow...It has been a few days since I posted last. It has been rough. I have not been doing much, just waiting. Just waiting for the results of the spinal tap. Although yesterday I had an appointment with my primary care physician for the first time since my visit at The Chiari Institute in New York. This is how our healthcare system is supposed to theoretically work: You go to your PCP (Primary Care Provider). They send you to a specialist. The specialist corresponds with your PCP. You then go back to your PCP. Your PCP then manages all of your care. So no matter how many specialist you go to, you PCP knows what is going on. I walk in and the medical assistant says (in an uninviting manor), "what are you hear for today? I have four items written down that I want to discuss with the dr. She interrupts me when I get to three and says, "that is already three and he will only do the most important things." I said, "Well they all have to do with my pre-op testing and diagnosis that he needs to know about. Just tell him I am here for pre-op lab work and to let him know my diagnosis from New York." I have to keep it simple. Remember "keep it simple stupid" or KISS. Well, that is what I had to do. The medical assistant was not the usual one. But when she realized who I was, she was much nicer. That is not acceptable. It is not acceptable to be rude until you realize who the person is. Then the doctor came in. His attitude was much the same. He was basically saying, "what do you want from me?" HELLO! You need to know what is going on with me! This is MY LIFE HERE!!!!! So I directed him on what I needed. What would I be doing if I were not a nurse? I would be completely lost. AGAIN, UNACCEPTABLE!!!!! I told him what my diagnosises are: Arnold Chiari 1 with cerebral spinal fluid blockage, Elhers-Danlos Syndrome, and Tethered Cord (Just as I suspected 5 months ago!). Then I let him know that the plan was to have the tethered cord release and that I was awaiting the CSF testing. Then I let him know that I also needed blood work. He ordered what I needed. Thank goodness I knew what he needed to order. Then I asked him where I could go and what we could do for the EDS (Elhers-Danlos Syndrome). He just skimmed over it and said, "There is no treatment." Then said nothing further. Now mind you, this causes fatigue, joint dislocation, and dibilitating pain. In fact, I have seen him several times in the past for issues related to this. Nothing from him at all, no hope. I have done research and believe that there is hope for treatment by a rheumatologist and they have braces to keep joints from dislocating and causing further damage. The Mayo Clinic treats it as well. I will continue to search. I will NOT leave it at that! I just can't believe he would just leave me with no hope! If I were at at different place in life, that would be devastating. Wow--Just Amazing. I have to get better already. So many people to help, so little time.

Concour Chiari Walk Accross America Sat, Sept 18th 2010

I have a new goal.

For those of you that know me, I don't say things unless I plan to follow through. A little hard headed, I guess. Next year, I plan to be the first one to host the "Concour Chiari Walk Accross America" walk in Arizona. This year 30 states will be represented. Next year there will be at least 31 states represented. So get in shape and get your walking shoes ready! I will be walking or riding in my wheelchair for the walk next year.

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** http://livelovelaugh-lace1013.blogspot.com/2010/09/conquer-chiari-walk-acoss-america.html (My new computer buddy and fellow Chiarian has a lot of good info on her blog. I have taken a lot of info from her blog for this post.)

More info about this year walk can be found here: http://www.conquerchiari.org/ccwaa10/LacieHeiser

Conquer Chiari Walk Across America

WHAT? A series of coordinated Chiari walks held at the same time across the country.

WHERE? It is our goal to have at least one walk in each of the 50 states. This year we have 30 walk locations.

WHEN? Saturday September 18th, 2010. September has been named Chiari Awareness Month in several states. In conjunction with the Walk Across America we hope to get more states to recognize September as Chiari Awareness Month.

WHY? To raise awareness of Chiari; to raise money for vital research; and to get people involved.

In 2010 it is our goal to raise at least $300,000 for research. In 2009, more than $250,000 was raised with 90% of the money going directly to fund exciting, new research projects.
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Mom working to raise awareness

http://tonawanda-news.com/feature/x627001221/Local-woman-leads-charge-against-neurological-condition

Concourchiari.org is another good site

The above link will take you to a story about a mom that started having symptoms in pregnancy and now has organized a Chiari Walk to raise awareness. She has also gained some government funding for Chiari awareness. A major problems is that medical professionals know nothing about it. How are Chiarians supposed to get help when there doctor's know nothing about it? The average time is 5 years for a diagnosis. She is hoping to shorten that time to 2 years. Still too long but better. When I look back, I have been suffering since I was 16. I was even hospitalized @21 for 4 days. Then every year, it seems, I am tested for things like lupus, lime disease, and other auto-immune diseases. When I was in nursing school, I remember coming home on the weekends and practically sleeping through the entire weekend and my joints hurt so bad. Then working nights clouded my aches and sleepiness too. Several times, I asked doctors about it but they blew it off, "You are doing too much" or "Get more rest". The problems was, no matter how much sleep I got, I was NEVER RESTED. I am a "glass half full" kind of girl and nothing is going to get me down so I just kept pushing forward. Nausea has always been a problems for me. It was really bad when we went on a cruise in March. Now, looking back, I was on the downhill slide to the "big episode" and being hospitalized for meningitis. And headaches have always been a part of my life. I have NEVER known a life without them. But, I just took Tylenol or Advil and worked my way through school and work. Oh, and both of my pregnancies were horrendous! I can not even imagine going through that again. The "normal" morning sickness never went away. I also had the pain in my neck and what I thought was sciatica. Again, blow it off to pregnancy. I never understood how someone could "love" being pregnant. But now I know why, I was sick!

The bright side to all this! My sister and I got me into the Chiari Institute really quick. I have been unable to work since 4-29-10 when I had a sudden onset of headache and inability to speak and word find which was preceded by approximately 4 hours of chills and puniness. So hopefully, my "down time" will be limited thanks to my sister and my pushiness. So from April to November (hopeful surgery date), approximately 7 months. Way faster than most. I can not even imagine if I would have had to wait for Dr referrals. That would have been so frustrating and devastating..... If anyone is reading this and needs help completing paperwork or questions, feel free to email me. I would be happy to help you. Even if you just need moral support, this can be difficult. A doctor telling you nothing is wrong, when something is clearly neurologically wrong.....Is so hard. The sad thing is, instead of saying "I am not sure, lets get you to someone that can help." The medical profession may say something like, "The mind is a powerful thing" or "You have Anxiety". Those are exact quotes that I heard. I am sorry, just because a doctor does not know what the problem is, it does not make the problem a mental issue. I read a statistic that 57% of Chiarians are diagnosed with a mental condition before correctly diagnosed with Chiari. Don't give up! I am willing to help!

Great day!

http://www.asap.org/index.php/medical-articles/cine-mri/

(info below taken from website above)
Cine MRI Cine MRI (as in cinema) is taken the same way a traditional MRI is, with the addition of either a wristband or EKG leads on the patients chest to measure the heart rate. Each time your heart beats, the cerebrospinal fluid is forced out of your brain, down toward the spine in response to the flow of blood that enters the brain with each beat. The MRI machine is equipped with an additional software package that allows the images to be put together, showing the flow of the cerebrospinal fluid (CSF) as it is moving.

Cine MRI's are sometimes ordered for patients to help doctors determine the amount of CSF flow through the foramen magnum. It can be useful in cases of "borderline" Chiari Malformations or when the question of whether or not decompression is needed is not readily answered using a traditional MRI. A radiologist can determine the amount of fluid that is moving and compare that with normal subjects. Cine MRI's are sometimes useful in showing other CSF blockages as well. Cine MRI's are not readily available to all patients, and their practical use is still debated by physicians.*******


I had the above Cine MRI done when I was in NY. They did find a CSF (cerebral spinal fluid) blockage. That alone would explain why I have pressure headaches, constant "ache" headache, and why I can't go on bumpy roads. CSF is a fluid that essentially floats your brain, it also feeds your brain, has immunological function and assists in homeostasis of blood pressure. So if the flow is restricted, the brain is starved and part of the cushioning is gone. The restriction they found is at the base of the skull through the foramen magnum. My Cerebellum actually protrudes through the foramen magnum. (IT IS NOT SUPPOSED TO DO THAT). When the fluid is not there to "float the brain, the brain is hitting the skull! Yikes---and yes it HURTS LIKE HELL! Also, when the CSF is not flowing to parts of the brain, it hurts, kind of like a heart attack. My blood pressure is usually low but with just a turn of my head, I have drastic changes in blood pressure. So weird.

I had a GREAT DAY TODAY! Around 0900, I realized I felt OK so I called my friend. She happened to be in my neighborhood so she swung by and picked me up. She took me to run around. We went to the store, the bank, and to get a sandwich. It was so fun. Her daughter is 18 months old. She sat on my lap for a little bit when I was driving the electric wheelchair. She thought that was pretty cool. Until she got board. Then they hung out with me for a little bit at home. At one point I looked over and she had Justin's Ipod to her ear like a phone. Then her mom realized that she had something in her mouth. The baby quickly swallowed it. Guess what? She swallowed both of the rubber parts of the ear buds! Gross but really funny!

YAY FOR THE GOOD DAYS!!!!

Pre-op testing complete...now wait

All the pre-op tests are done....Now we just wait for the results....I have an neurology appointment on the 23rd. Hopefully the lumbar puncture results will be back by then. When they are back and clear, we send them to The Chiari Institute and we can schedule surgery! I am hoping for early November.

No kids this weekend :(. I was so worried. Usually, I had Kyler with every weekend. When Justin would be working, Ky would be there to help me if I was having a bad day. I am really missing him. My sister is coming up to stay with me though. Can't wait. I think we are going to lay by the creek in the shade while Justin works on the creek crossing. When we are not doing that, I hope to watch some funny movies and eat ice cream. We all need some happy things to lift us up.

I don't even know the dates of surgery yet, but last night, I was trying to find ways to have a night layover in Little Rock. That way I can see Kyler before I have surgery. I miss him so much. I bet he has already grown a foot!

Tap tomorrow...Little scary :(

Lumbar puncture, spinal tap, whatever you call it....yucky! Tomorrow is the day of torture. Justin has to take the day off of work. My appointment is at 11:00 am but we have to be at the hospital by 10:00 am. Which means we have to leave Prescott by 8:00am to be in Sun City on time. Then after the tap, I have to lay flat for two hours and then the drive home will put us back in Prescott at approximately 3:00pm. A full day to say the least. I am nauseous just thinking about it! The testing for aspergillosis will take about 3 weeks. Hopefully it and the other CSF test will be clear and then I will be able to schedule neurosurgery. The surgery is actually called "Section of the Filum Terminale". In English, they are cutting the connective tissue that tethers the bottom of the spinal cord to the base of the spine. The use a tool to test the tissue to be sure that they are not actually cutting the spinal cord. As you could imagine, it looks very similar and they do not want to accidentally cut the actual spinal cord. That would be very bad.

When we were in to see the surgeon in NY, he told us this funny story about a husband and a wife. The husband was a rather large man and was a Navy Seal. Dr B told us that the husband sent him an email the night before his wife's surgery simply saying, Dear Dr B, You do Neurosurgery and I break kneecaps.... It was so funny. I wish I was thinking clearly but I was tired at the time. My hubby is in construction and is a cattle rancher. So afterward we were thinking and came up with this, My husband is going to send him a message the night before my surgery saying a little something like this, Dr Dr B, Remember the story you told us about the husband that was a Navy seal? Well, you do neurosurgery and I dig big holes and cut off nards.....

Have a wonderful hump day everyone. :)

Chi soft cervical traction device

Fellow Chiarian's or anyone with cervical neck pain. The neurologist at The Chiari Institute recommended this. They are usually around $100 but I got it off of Amazon.com for $40. It helps relieve the muscle tension in my neck and I think it helps with the flow of the the cerebral spinal fluid. We came down the ranch road today and I did not even cry. It really worked! It stretches my neck out. I feel taller after I use it. It just makes me feel unballed, that is the only way I know how to describe it. I just got it last night and I am already in love with it!!!!!

little piece of heaven

Good Saturday morning!

Going to the Ranch. So excited to see the beauty that the rain has brought us. I bet it is green out there. I bet there are lots of little baby cows running around. It is so fun and exciting to see. If it gets warm enough, the kids will get to play in the creek. It is hard to believe but they have not played in it once this year. I was sick all summer and they never played in the creek. They usually do every-other-weekend all summer long. Hopefully we can get some pictures so we can share the beauty with you.

My mother-in-law just returned from vacation. I can't wait to see her pictures and hear their stories. Oh, I also can't wait for her wonderful home cooked meals. Since I have been sick....I take that back, always, she always cooks for us. It is part of her identity to cook for the ranch hands and her family. We have NEVER had a meal that we did not like. She is officially (next to my own mother), the best cook in the world! She also has every movie we ever wanted to see. We love to go "check out" movies from Grandma's movie store. We have missed them while they were gone. Cooper, my dog that became her dog, missed her the most though. That dog is so freakin spoiled. She gets up and makes him a full breakfast in the morning. He did no know what to do when she was gone and all I gave him was dry dog food. He thought he was so abused. He did not eat for days. I finally broke down and put hot dogs in the food but I refused to "make" the dog food.

So I must endure the "hell on earth" of driving the two mile dirt road to get to our little piece of heaven. But, it will be worth it for a few days in heaven!

Have a safe and fun holiday weekend everyone!

Life's delicate balance

So today is the first day that I got out of bed with the kids before school. I actually feel okay, well---at least I don't feel like I was ran over by a truck last night. Maybe like I was hit a week ago and I am healing. :/

This morning Weston and Jake did not have any clean shorts. I almost cried. They have pants for goodness sake, they can wear them. But they both chose to wear shorts that they had already worn once before. Heck, I do that with my jeans all the time. However, it is just little things like that almost send me over the edge. Last Saturday night we had the medical benefit dinner. I had to put my best face forward but I have not gotten out of bed since. The only things I have done is go to the bathroom, eat, and go to one dr's appointment.

So my delicate balance act begins on days like today. I feel okay and I have so much to do. Justin already does so much. I don't want him to feel bad. He already does enough and he could not possibly do any more. So, days like today...I put a load of laundry in and rest. Then I do something else and rest. Then we play this little game of "Don't do too much, you will run yourself down". So, I have to just live with piles of clean laundry. At least they are clean. They may be wadded up and wrinkled but at least they are clean right? Then you should see how Weston comes home dressed some days! He teacher must think we are nuts...

I am such a strong independent woman and it is very difficult to depend on others for everything. One thing I hope to get back from surgery is the Independence of driving. That will be a huge gift back. No, I take that back...I hope to get three things: the ability to drive, relief from migraines, and ability to walk (unassisted).

Please God, give me the strength to get through the good and bad days with strength and dignity....

X-box Raffle winner/ psycho exam hee hee

Kathy Miller, an RN at the VA, won the X-box Arcade game. She has grand kids that are going to love it! Yay! We made just under $1000 on the raffle. Thanks to everyone that bought tickets and to David for donating it. That will make a huge dent in our medical bills.

I passed the psychological exam this morning. And, no matter what you say....I did not cheat! I really passed. I am prepared for surgery. We did discuss my ups and downs in emotion and discussed that they are "normal" for what I am going through. I actually feel pretty darn good emotionally. Amazing, I know, but I do. I am somewhat relieved to have these diagnosis. That is weird too but it gives me answers to why I feel the way I do.

My neurologist called me today. Yep---that is what I said. We are becoming quite the phone pals. He called me to discuss the strange test they want for surgical clearance. The last think I need now is a spinal tap. They will be testing the cerebral spinal fluid for aspergillosis and any other CSF infection. The good thing is that will be soon. Bad thing is, he thinks that test takes a few weeks to run in a lab. Darn it. He is a little worried about doing the spinal tap. I am too! It seems like that is what send me in this downward spiral in the first place. Anyway, we are going to be put back a few weeks. I am also going to call my primary care physician to have blood tests done too to make sure WBC and RCB are back in normal range. I think I will have them run a blood test for aspergilosis too. Might as well to be on the safe side. Hopefully That will all be negative and we will be on our way.

The reason the dr's from The Chiari institute want the aspergillosis rule out is due to some of the strange symptoms I have. They are visual and can be scientifically proven, they just don't know what the hell is causing them. There are so many things in this world that there are not answers for. The scary thing is that usually, you do not get aspergillosis (a fungus) unless you are otherwise immunocompromised. The doctors also believe that I also have some other kind of autoimmune process which would explain that. So, that will be another step in this long process. I will have to try to figure out what the heck is going on there. Lupus? maybe---that always seems to come up. Every darn year. And, when I came back from my cruise, I had a strange rash on my face. I chalked it up to sun exposure and over use of sun screen. Lime disease? That seemed to come up a lot too? Who the heck knows. I have high auto-immune markers.

Maybe someday we will know what the heck is going on. Until then, we are on track to get one problem under control. NOTICE: I said "under control" I want all my friends and family to know that the tethered cord will be released and there will be some relief but there is no "CURE" for Chiari. There will be good and bad days for the rest of my life. Please be patient with me. The new diagnosis of Ehlers-Danlos Syndrome, is just setting in. Not sure what to think of that yet. It will never go away. There is no "CURE" for it either. Once it gets bad enough, surgery can be done to tighten the ligaments in affected joints. Also braces can be warn. That is something I think will help me a lot. The Ehlers-Danlos is a connective tissue disorder and is probably the reason I have tethered cord (a disorder of the connective tissue of the base of the spinal cord). The Chiari Institute is doing the research on the link between the two. Yippee. I get to help by participating in that! I will have DNA testing done. They will hopefully be able to isolate the gene that causes this syndrome.

Anyway---we are well on our way to setting a date for surgery. One more hurdle for this slow moving turtle!