Hope Floats-Fundraisings Ideas

<--Weston 2010

Still waiting on a date but HOPE is keeping me afloat. Most of you already know that the surgery that I may need is going to cost a small fortune and is out-of-network for my insurance. So here are some of the ideas that have been put out for fundraising ideas. Please keep sending ideas.

These are the fundraisers we are going to do:

50/50 raffle ongoing until a set date (I hope you all can help me out here)

bowling with baked good sale (I hope to contact the local news paper and radio station for a better turn out. I will also be making flyer and posting an event on Facebook).

These are a possibility:

silent action (any donations?)

a friend mentioned she may want to run a marathon with fundraising

sand volleyball tourney

bike run

pool tourney

golf tourney

So what do you think? I am all for thing that are fun, cost effective, and can help us out. I hope everyone is having a wonderful, happy, healthy summer!

If you would like to help with selling the 50/50 raffle tickets, please send me an email at KNitschke@hotmail.com. I need to get some dates before we start. If you live out of town, this is something you can help with. I will be happy to mail out as many and you think you can sell. :)

Jumping For Joy---THANK YOU!

Yesterdays post was kind of desperate. I was really upset since I keep going to doctors and there is no clear cut care plan. Every time I go to a doctor I am treated badly and I am sitting at home with my muscles wasting. My primary care doctor seemed appalled that the neurologist had no clear plan of action. But, to tell you the truth, he doesn't know what to do with me either. Yesterday I was at a clear breaking point. I was praying or begging god for help. Whatever you want to call it. I needed some kind of hope. So this morning, my care manager from BC/BS called. She gave me the courage needed to call New York and I did. The surgery coordinator told me that I had been approved to be seen by the neurosurgeons! I immediately began to shake and cry but had to keep myself together enough to complete the phone call. She had to transfer me to the person that schedules the appointments. That person was not available so I had to leave a message. I do not have the dates yet but I do have an APPROVAL. Yeah, Yippee, Jumping for Joy!!!!! I was laughing, crying, shaking. The emotions took over my entire body. Justin did not answer his phone so I called Kristi. It was a bad connection and she could only hear that I was crying. When she called me back she told me that she and Jace quickly dropped to their knees and prayed before they called me back. Then when they called me back I was composed enough to tell her the news. She too cried. Within five minutes I got a call from one of my VA coworkers. I said, "why are you call me?" She wanted my blog address. I told her that it was funny because I just got the wonderful news. When I finally got a hold of Justin, the same thing happened that happened with Kristi. He did not know why I was crying. All he heard was New York and that I was crying. Of coarse the fear is always the worst. When he came home for lunch, I could not wait to just hug him. "I am finally going to get the help I need".

Now that I got that out----THANK YOU! That is Thank you for praying. Thank you for Fasting. Thank you for thinking of me. Thank you for your kind words . Thanks for feeding my family. Thank you for donating you leave time. Thank you for EVERYTHING!

"Focus on your potential, not your limitations." JM

Kristi and I February 2010--------->

"Focus on your potential, not your limitations." JM

This morning Kristi and I woke up and went to shopping. She wanted to make sure we had everything before she went home. We also went to the UPS store and shipped off the Baby Alive doll that I talked about in the prior post. I hope little girl I am sending it to enjoys it as much as I think she will. She then made everyone lunch. The whole morning she was a drill sargent and had my kids whipped into shape. They were vacuuming, folding, cleaning.....She cleaned my bathtubs and toilets. It was amazing. Before she left, my coworkers were right on time bringing our family weekly meals. Kristi was so impressed that we were both crying our eyes out. I had told her that they brought us food every week but she was overwhelmed by how much thought was put into snacks and meals for our entire family. Again, I only worked with these wonderful ladies for six weeks prior to getting sick!

My PCP is supposed to be calling NY to make follow up and see if they are going to be seeing me. However, Kristi called me a couple hours after she left. She said that I should go ahead and make an appointment at Barrows. She thinks maybe a third opinion may not hurt. So, here we go. I called and left a message to make an appointment. It just makes me sick to my stomach to see any doctors at the rate I am going. However, eight weeks ago I was fairly healthy and I am getting weaker and declining. Something has to be done. SOMETHING neurological is going on and it can be seen if you spend any time, at all, with me. Please keep your fingers crossed that I can finally get a neurologist that wants to help me instead of wanting to prove me wrong!

Maybe god just wanted me to slow down and be with my kids more.

Hello GOD, I hear you! I love my kids. I am spending a lot of time with them. They know I love them and they love me. I want to get up and walk and run and play. I don't want to lay here any more......PLEASE SEND ME HELP!

Kristi, one of my caring, loving, funny, beautiful, sisters, came to visit me this weekend. We laughed, cried, visited, slept, got pedicures, went to the doctor, and much much more. When I was able we were going...When I was not, I slept...She has a really good friend with advanced Chiari that she helps. She understands how it affects people. She understands the good days along with the bad.

On Friday, I visited my regular doctor. I understand that I do not "fit" into the usual patients that they see and that I do scare the hell out of them. They truly do not know what to do with me. However, he takes the most time out of any Doctor that I have seen. That being said, it was still complete HELL! I imagine when they see my name on patient list, they cringe. They probably thing, "Oh goodness, what does she want?" At least I am pleasant when I forcefully push my way through getting what I need. When I first got there, they are basically asking "What do you need now? or Why are you here this time?" I let them know that I am not improving and in fact, am declining in some ways. I let him know that I am unable to walk unassisted for more than 20 feet. He stood me up, had me close my eyes, and pushed me from side to side to check my balance. My sister did say that he had his arms around me to protect me. So there are glimpses of human behavior in this doctor. That kind of movement jars my back and neck. I immediately had one of the worst headaches and nausea and began to tear up. The doctor realized that he had hurt me and that I was not faking and turned into a robot staring into the computer screen. "I can not give you pain pills. I can not give you zofran. I can not give you....I can not give you..." in the perfect robot voice. He pulled up the awful neurologist record and said the neurologist did not think there is anything to this. We talked and I was examined for a good 45 minutes. I had made my list of things that I needed and that I was going to get prior to leaving. Before the doctor left, I told him very tearfully, "I am a mother of five and a wife. This is not how I want to get attention. I want to get my life back. The only place that recognizes this condition is in NY. It is called Occult Tethered Cord." I went on to show him the one MRI that showed "low-lying cerebellar tonsils" and my diagnosis of neurogenic bladder with dysenergia(?) from the urologist. Those are true scientific readings that no doctor can deny. He turned back into a human for a brief moment again and googled the Chiari Institute. He then said he would call them on Monday, patted me on the arm and left the room. The medical assistant then came back in the room after several minutes with only a prescription for something for nausea. There was not order for a walker and no pain meds or consult for pain management as we had discussed. This was Friday afternoon at 4:45. If I would have left, I would have been out in the cold all weekend. So, I stood my ground (nicely). That poor medical assistant did not know what to do but I was not leaving and neither were they until they gave me what I needed! We finally got everything we needed even though the doctor was kicking and screaming about the pain meds. I don't care though. If it were him, his daughter or mother, he would make dang sure they had pain meds---that is for sure! After that whole ordeal, all I could do is lay down and sleep. The doctor does not understand that my brain is being pulled down into my spinal column and when he jerked me around, he was causing my brain to be slammed up against my skull. FLAT OUT EXHAUSTED AND IN PAIN!!!

Yesterday, Justin and I had the adventure of purchasing my new wheels. It is a pretty purple 4 wheel Lumex walker. Weston's aunt from Oregon is going to send me some bling to make it even more of a fashion statement. When I used it to walk out of the store, it immediately relieved the pain in my lower back. It is somewhat embarrassing but at least I can get out of the house and I wont die of vitamin D deficiency. It has a seat so when I get tired, I can sit and rest. NICE!

Last night I got to see part of Karra's Soft ball game. I saw her up to bat and score so that is sooooo cool. Kyler's allstars start next week. I hope to see some of those games too!

Kristi took me Wal-Mart the other day. I was able to buy a Baby Alive with a stethoscope, medicine spoon, thermometer, and bandaids. We also bought more bandaids to go with her. We got off of this for the little three year old girl that I talked about in my last post. She will be having surgery for the same condition I have. It will be good for her to feel comfortable with all of the things she will see when she goes into the hospital. And, it also makes me feel good. We will mail it tomorrow with a cute little note. She has "orange" hair like our Joshy (my nephew). She doesn't call it red, she says that it is "orange" like Joshy used to. Funny. I looked for a baby with red hair but there weren't any but I found one that is blond like me (ha ha, well paid for anyway).

I hope everyone had a wonderful weekend. I look forward to hearing from everyone. Feel free to send emails or comment. I read all of them!

KNitschke@Hotmail.com

The circle of giving goes on and on

I went to breakfast with some coworkers yesterday. That was nice to get out. And, once again, I am blown away by everyone's kindness. Another 96 hours of annual leave has been donated to our family from VA employees. That means that nearly 300 hours of precious paid leave has been voluntarily given to us! What have we done to deserve this? I do believe in the circle of giving. So as I get better, the circle will continue. I GUARANTEE THAT!

This blog was started on June 12th. In the first week I had 100 hits. Then on the 8th day alone, I had 50 hits in one day! You are all so inspiring. Thanks for letting me tell my story. It really makes me feel better. It is keeping me from going insane!

I have a story I want to tell. A couple weeks ago I got a message on Facebook for a mom, a total stranger. She stated that her three year old had just been diagnosed with Chiari Malformation type 1. She asked if I had any information that I could share with her. It was desperation. The kind of desperation I have been feeling. However, I have had the leadership and hope of the three other people, in my life, that have the disease and know about it. I also have the background of being a nurse and the medical lingo to understand what is going on (most of the time). My immediate response to her is, "How did you find me?" Here I go on the religion thing. Not too religious but I would say, she was directed to me.......I had been doing endless amounts of research. I had websites for her. She had simply typed in Chiari on Facebook and found me? Out of all the people in the whole world, and she found me? Her daughter is three and has to have surgery in the next few weeks. She had no idea even how to explain what was going on to her daughter. I explained that in nursing school, they taught us to teach kids on stuffed animals what they were going to have done. To speak to them honestly and at their level. That way you do not lose their respect. I advised her to get some bandages and let her put them on the stuffed animal. We have gone back and forth several times. To tell you the truth, it makes me feel good too! Today I am going to Wal-Mart to get her some coloring books and crayons. I also just thought of a perfect gift for her, I am going to get her a little stethoscope kit. Doesn't that sound PERFECT? She can practice on her favorite toys and wont be as scared when she has to go into the hospital! Yeah, I help her and she helps me..... The circle goes on and on......

Top 5 Brain Misfires

When I was laying in bed last night I thought that some of you may find it amusing that my mind is misfiring. Well, not that it is misfiring but the way that it manifest itself. Here a my top 5 so far, in no particular order. ENJOY!

1. I was making conversation with Kyler and his twelve year old friend about all stars. I asked them when they were going to get their "costumes". Oops, meant to say uniform. Not cool mom. Oh no....I am one of those mothers.....nerdy

2. When typing out Spongebob, I typed Spudbob. Look out everyone, there is a new cartoon character, a potato with square pants.

3. One of my friends came up to talk to my dad and I. I see her almost every day. For the life of me, I could not think of her name. Embarrassing. Again, last night, Justin asked me her name. Blank mind...... However at 11:00 pm last night, when I was sleeping, I remembered. So guess what? I woke him up and told him. "Carrie! That's her name. Carrie!" He had no Idea what I was even talking about. Now he know how I feel.

4. Vicodine and QVC to no mix. That is all I am going to say.

5. I tried to drive to lunch the other day. Remember, the part of my brain being squeezed, is the part affected by alcohol (coordination, sight, balance, etc). Driving is not a good idea. Luckily, Ky and Lexi (Both 12) had just gotten in with grandma and grandpa. I pulled up to a four-way stop. When I attempted to push on the break, my foot did not work. When it got back to my brain that my foot was not working, my body overcompensated by pushing even harder on the break. Well.....needless to say, that made me stop really hard and really fast. It also made a loud squealing noise. Oh, my goodness....The kids would have totally told on me. I have not driven since!

What goes around comes around

When I was a nursing student, I was the Student Nursing Association President for the local chapter. When we first started, the participation was minimal. However, when our group graduated, there were 30 active members. We raised funds to send 8 members to the National Student Nursing Association Convention. We also donated numerous hours to information input and shopping for "Dress-a-Child", a local program to provide clothing for children in need. There were many other things we did to help others. Needless to say, we were killing ourselves in nursing school and somehow felt a need to push the envelope a little further to give to others.....Well, I was just notified by the Yavapai College administrative assistant that the current Student Nursing Association had started "Ellie's Angel's" and are offering services such as driving people in need to dr appointments, to the grocery stores, and to do errands, etc. She is providing them my contact information so that they will be able to assist me. Isn't that the neatest thing you have ever heard?

The same day, I heard from another friend from nursing school. She said that she had put me on her prayer list at church. How nice is that? So complete strangers are praying for me!

One of the most touching moments was when my dear friend Stephanie told me that every time her daughter prays, she includes me in her prayers. Her daughter has never met me but somehow finds it in her heart to think of me in her prayers! Wow, Steph--you have outdone yourself there!

Kristi, my outstanding sister, is coming to visit this next weekend. She and her family have fasted and prayed as well for me. See, proof that this world is actually full of caring, kind, loving people.

So remember, what you put out in the world does come back around......

My kids will not starve if I don't get out of bed

<--Me nearly eight weeks in bed. Still smiling.

I had found the following before but, for some reason, it made me cry today. I sometimes feel that my kids may starve or that the house is going to completely fall down around me if I don't get out of bed. Not true. They are able to do a lot for themselves. Thank goodness. I got the following at http://chiari65.bravehost.com/ . It makes me feel better. I plan to print it and put it on the fridge.

A Chiarians Creed
I promise to accept the fact that I have Chiari Malformation, a neurological disorder which will limit my abilities in my every day life.

While I will always have Chiari, some days will be good, and some days will be bad.I will be thankful for the good days and try to make the most of them. When I am having a bad day, I will try to remember that most likely it will not last.

When I'm having a bad day, I will listen to my body, and get the rest I need. I will let my family know that I am not feeling well, because they can not read my mind.

I will not feel guilty about resting, because I will eventually begin to feel better, and in the long run, it will also benefit my family. They will not become malnourished if they eat peanut butter and jelly sandwiches for dinner.

I will not feel guilty or worry about the work that is not getting done while I am resting. The world will not fall apart without me, even though it looks like it already has.

I will not let anyone else make me feel guilty for taking out for myself. They will never understand exactly what I am experiencing, the pain that I feel, the exhaustion that I feel.
They will never understand the fear that I feel when my symptoms creep up on me, and land me flat on my back.

I promise not to feel sorry for myself when I am feeling bad because there are a lot of people out there who are in worse shape than I am. I will not be sorry for what I don't have, but be thankful for what I do have.

I promise to learn a lesson from my illness, which is not to take life for granted. I will try to enjoy every moment that was given to me, and be thankful for the times that I can smile and laugh.

I will try to help others who also suffer from my condition. There are many confused and frightened people who need to hear comforting words from someone who has been there. There are many people who need me to take his or her hand, and be pointed the right direction.

Lastly, I will not ask, "Why Me?" While Chiari has weakened my body, it has strengthened my heart, my soul, and my spirit.

Shiela Reilly

MRI report/ No news is good news

My brothers and sisters, Tim,Scott, Dondi, Kristi, Me, Traci. And, yes, we all have the same mom and dad!

Being the nosey person that I am, I wanted to pick up a copy of my 3T MRI of my brain prior to my next torture appointment, I mean neurologist appointment. So, on Friday, we picked up a copy. What do you know, it stated "normal for patients age". It made me even more nervous to go to the neurologist. One of my "lower quality" MRI of the cervical area, showed "low-lying cerebellar tonsils". However, what the neurologist put down as indicators for the MRI were: headaches, speech impairments, and viral meningitis. Props to him, they are all proper things to list but it is as though he is trying to prove me wrong. Why not rule out chiari? Or, why not cerebellar ataxia (uncontrolled muscle movements), he did watch me walk. That would have tipped off the radiologist to look more closely at the cerebellum. Instead, they quicly looked at my MRI and thought it was normal for someone my age. After talking to several friends and family members, I got some balls (sorry if that offends anyone) and call called the outpatient imagining clinic that did the MRI @ 0700, when they opened this morning. Luckily, the lady that answered the phone was nice (can you believe it? someone was nice to me?). I told her the issue and asked that she have the manager of the facility call me when available. I let her know that I would be pleasant and not take much of his time. Wow, he actually called me back and was nice too. His name is Mike Miller and he works for Simon Med in Peoria. I don't mind saying his name because he was amazing. I told him the situation, told him that I had a cervical MRI a few weeks ago, read the results "low-lying cerebellar" tonsils on a poorer imagine machine and that I doubted that would have changed in a short period of time. Let him know that that the way the doctor ordered it, did not make the radiologist look twice at that area. I asked that he please pull my records and imaging file and have a radiologist look at it again due to the fact that as little as one millimeter (a little more than the width of a finger nail can make a difference). I told him that I was a nurse, how quickly my condition has declined, and that I did not want to go to the neurologist and endure him telling me once again that nothing was wrong. I also let him know that I did not want to go through the ordeal of driving to Phoenix, getting nauseous, blah, blah, blah....pay for another MRI, you get the idea. He totally got it. He looked everything up, called me several times this morning and let me know that he had all of the records from YRMC but the cervical MRI that I discussed with him. He requested the copy himself and will personally be following up with me in a week or so. Again, people amaze me!!!!!!! I happily called my neurologists office and moved my appointment. Unfortunately he will be on vacation the whole month of July so I will not see him again until August 3rd.

When I had one of my fun conversations with my sister Dondi this morning, I told her, It is 11:30 in NY and I have not heard from them. She said that she had forgot to tell me that they arrange everything such as testing, imaging, the many drs appts, etc before they even call me back so it may be next week before I hear from them. That is a little relief. Now it is 11:00 am her and I am still in bed. It is going to be one of those days again. The kids are all here but Wessy. They will have to fend for themselves today but for some reason, I think they will be okay.

If I have not told you lately, I appreciate you, every one of you!!!!

Gratitude/ fathers day/ upcoming appointments

<----Dondi and I in Silver City, NM in February,2010.

I have the best family, friends and coworkers. Who knew? I had only worked in my new position as the Blue Team RN for 6 weeks when I got sick. However, they have been so supportive. Can you believe that they have brought my family food every week for the last 8 weeks! That is longer than I worked in their department. They are like having 15 extra, loving, mothers. They also call, email, and text to make sure I am okay. I have worked at the VA for approximately three years total. Most of that time was in the ICU at night. Do you want to hear something even more amazing? My generous coworkers, from all over the VA, HAVE DONATED OVER 200 HOURS OF ANNUAL LEAVE TO MY FAMILY! That is outstanding and makes me tear up almost daily when I think about it. That means that I have been paid for an additional 200 hours more than I had as leave. People can truly be amazing and it makes me happy.

Today is Father's Day. Money is tight so I bought Justin a T-shirt from Costco. I know, I am a cheapo but Justin is really worried about our financial situation. However, my sister Traci swept and mopped the kitchen floor, made breakfast, prepared lunch, and bought up a nice patio table and chairs, and a new BBQ grill! So, Justin did not make out too bad. Well it is a good gift for all of us. A summer full of yummy food and relaxation. He kind of has a second wife without that one benefit. ha ha. The kids and Justin are getting ready to get into the hot tub. What a way to top off a fun filled Father's day for them.

I had a rough morning. In fact, the migraine, tremors and nausea were so severe they warranted a ER visit but you know how that goes. So, I self medicated, forced fluid, and finally slept for several hours. Another thing I am worrying about is the next torturous trip to the neurologist. My appointment is Tuesday. I have made another list of things I need from him. I will not leave until I get them. He may have to call security. Not really, well we'll just have to see how it goes. :) Hopefully in the meantime, I will hear from NY. Will have to continue to receive my meds from neurologist here. Have a primary care doctors appointment on Friday. Hopefully that will go good as well. Have decided that I am going to apply for social security disability. There are so many people on it that are not even close to being as disabled at I. I am to the point that I can't even walk 20 feet. And, that 20 feet needs great assistance. I may breakdown and get the walker that has been recommended. Can you imagine? I am 32. 8 weeks ago I was running/walking 6 miles a week and weight training. What happened? Any ideas? Please, someone help me? I am getting desperate.....

ER experience and some happy times

*First I need a little disclaimers. Sometimes when I am writing, the wrong words come out for ex: right instead of write. I also have a hard time getting things in order. So just hang in there with me and I hope you just find it entertaining. Just laugh with me and not at me!!!!he he he

The week before I saw the neurologist, I had the worst migraines with nausea, light & sound intolerance, with extreme tremors. However, I knew that I had the appointment and I knew that the local hospital could not do anything for me. My husband, mother and I thought long and hard about driving down to Barrows. However, I was so nauseated that I could not move from my darkened room. I had to lay as still as possible with a blackout mask on my face. My body tremored so badly that the entire bed shook. Justin just sat at the end of the bed and watched me lay there for four hours. We decided to stay home and he forced fluids and I take the vicodine and zofran I had at home. The ride to the Valley would be intolerable. When I had to go to the bathroom, my mom had to almost carry me with her arm around my waste. My legs get so weak and wobbly that I can hardly walK, especially when my head hurts?????

Then the evenT with the neurologist occurred.....as discussed in last post.

I had talked to Dondi (my sister with Chiari and Occult Tethered Cord) and told her about the migraine episode and told her that I did not want to go to the hospital due to the way the doctors treated me. She said, "You have to go when it gets like that. Honestly, who cares what they think. I have been treated badly. I think they would treat an animal better than they have treated me." Sad, huh? Our ER doctors are so scourned and hardened that they treat everyone bad! Well, I experienced that first hand. Two weeks after my horrible awaited neuro appointment, my topamax had not had time to kick in. It must be started slowly and not been up to full dose. I, once again, had a horrendace migraine with nause and tremors. The tremors were worse this time. I went from the couch to the bed and tried to relax. They lasted 40 minutes. That is 40 minutes of every muscle in my body contracting and relaxing again and again. Exhausting! I was also scared that they could possibly be seizures? I was not sure? So, taking my sisters advice, I went to the ER. It took Kyler, my twelve year old son and my mother to help me walk (bobble) down the hall, down the stairs and get into the car. When we arrived at the hospital, Ky ran in and go the wheelchair. He wheeled me in directly to the triage area. I was tremoring sooooo bad. However, they make you answer all the stupid questions. My speach also goes downhill when my head hurts. Making the questions more difficult. This entire time, I have the blackout mask on. I arrived right at shift change. Not sure if that is what pissed the dr off but, for some reason, he was in a bad mood. The nurse came in and asked the same damn questions as the triage nurse. Next the doctor comes in and asks them once again! What the heck. Can't they talk? Why does someone suffering so bad and tremoring uncontrolably have to answer the same damn questions three freaking times!!!!!!! Then without warning, the doctor reaches down and yanks the blackout mask off my face. Yep, that is right ladies and gentlemen. A person suffering from intractable migraine with photophobia and the doctor took the mask off without the courtesy of telling the patient. My son Kyler is about to cry. He is so scared. He had never seen me tremor before. He was not home the prior episode of extreme tremor. Then to see the doctor to be so degrading and act so vile to the woman he loves the most. He did not know how to respond. He did know it was not right. Hopefully he comes away with a life lesson. Hopefully he learns that everyone deserves to be treated with respect and dignity no matter your preconception. I have talked to him about it. I believe he did learn from it. Yeah, something good came from something so bad. Oh by the way, they did give me meds and I did feel better but Dondi is right. Animals would have been treated better....Sad but true.

Now, I promised I would share some good times. Wessy is staying mostly with his dad for the summer. But I think he may be one of my best medicines. He is such a lover. I told him that I had short term memory loss so he would have to hug me and tell me that he loves me cuz I keep forgetting. So when I say, "I forgot something". He smiles and runs over to hug me and says "I love you". So sweet. Kyler has made the Allstars so he is practicing everyday. Busy, busy, busy! He is growing up into such a fine young man. He keeps me company most days and helps out A LOT! I also discovered that I really like to be outside since I don't get out much. Justin took me downtown the other morning. I drank my coffe on a bench on the square in Prescott. If was 71 degrees and beautiful. The water fountain was flowing, the birds chirping, and the hum of Harley motorcyles rolling down the road.were nice to hear. Later that same day, Justin took me to the little boys school and layed out a blanket for me. He and Jake played catch and shot each other with the airsoft guns. It is really funny cuz they are not always so soft. I am really enjoying the time at home. Can't wait until I can get around a little more. Today Traci took me to Costco. I used the electric cart. I had it pegged. The do not go fast but the do really good U-turns. And, I was really proud that I only curb checked once. Better than my vehicle driving! Until next time, ENJOY YOURSELF AND YOUR FAMILY!!!!!

Long awaited trip to neurologist

4/29/10
new onset ongoing

x migraines
x daily headaches
x sensitivity to light
x noise sensitivity
x vision changes
x balance problems
x dizziness
x nausea
x difficulty swallowing
x frequent urination (neuroginic bladder)
x urinary urgency
x neck pain and stiffness
x low back pain
x leg weakness(difficulty walking & going up stairs)
x numbness in hands and feet
x upper arm weakness
x Shortness of breath


If you have read the above signs and symptoms, CONGRATULATIONS! You have just read more than my neurologist did. Yep, you read right. I took the time to right out my signs and symptoms and check whether they were new onset or ongoing. I did this because of my difficulty speaking. I also did not want to forget anything after waiting a month to see the almighty neurologist. What did he do, he glanced at it and said "You have more problems than most 80 year old men." "No $hit", I thought. "That is why I am here". Luckily, I did not say either statement aloud. He did ask what I thought the problem was and I said that I thought I had Tethered Cord, that I had the symptoms and my sister had it and had the surgery a year ago. He did a quick neuro check and said, "You don't have any of the symptoms." I almost fell on the floor. Let me back up a day. The day prior, I had visited the urologist. Thank goodness, my sister had advised me to see a urologist. If I have neurogenic bladder, that would prove that I had tethered cord. Tethered cord is where your spinal cord is pulled, or tethered too tight to the bottom of your spine. When it is pulled too tight, it causes damage to the bottom of your spinal cord. At the bottom 0f your spinal cord is your urinary, bowel, sexual, and leg functions etc. So, if you can prove that your bladder is neurogenic, most likely, you have tethered cord or some other neurological problem. I am no neurologist but duh!!!!! So, back to the neurologist office where he just said I have not symptoms. His next sentence is, "You have anxiety, maybe it is just that." Okay, as most of you know, my blood pressure is building and my face is getting red, steam is about to come out of my ears, Justin turns to look at me with eyes big to see my reaction. Good thin I was held back by my speech! I pulled out the copy I had already provided the Drs untrained medical assistant and handed it to him again. It was a copy of the neurologist note showing the neurologist report of nurogenic bladder with disenergia (?spelling) and said "I already provided a copy of this for you but ANXIETY DOES NOT CAUSE NEUROGENIC BLADDER!" (of coarse I was stuttering and sputtering and shaking to get that out, my whole body was tremoring) Justin is waving his hands at me and saying "Calm down, calm down." I think he thought I was going to get up and sock the guy or freak out and start crying. Well when I went into this doctors appointment I had three things I wanted to accomplish: a prescription for topamax (for migraines), zofran (for nausea), and an order for speech therapy. After I handed him the paper that showed the neurogenic bladder he did a little more indepth neuro exam and had me walk. He then ordered a 3T MRI, and EEG (seizure detection), everything I wanted, and set up another appt with him. I am not sure if I scared him or he just wanted to shut me up. I don't care. It was an awful experience and if I did not have the experience from my sister or the background of being a nurse, I would have been totally left out in the cold. I also sent my own records to the facitly in New York and Milwaukee that both specialize in Chiari Malformation. The one in New York is more world renowned and 50% of their surgeries are fixing other hospitals mistakes. They also do a lot of research and work on Occult tethered Cord, which is what I suspect I have. The problem with New York is that the Doctors are out-of-network. Milwaukee is in-network. However two weeks ago, they reviewed my case and declined to see me. That was really upset me. The same day, I heard from New York. They needed one more item. That item has been sent and received. From what I understand, they review cases on Friday. Today is Friday. I hope my case hits that desk today. Not sure how many cases are in front of me. I am not too religious but I am praying that they can see me soon. My family needs their mother and wife back! Next time, I will talk about an ER visit and some good days! Don't want to always be a downer.....Oh, happy Fathers Day to all to my hubby, daddy, step-dad, and father-in-law! Love all of you, you are great men and role models!

Weston, Karra, Jake, Lexi, and Kyler

My many thanks!

I needs to start by thanking my hubby, my sisters, mom, dad, coworkers, and friends. First Justin has quickly jumped in to do everything that he can beyond working his regular job, doing work on the ranch every weekend, and finishing up as a baseball coach for Jake's baseball team. He is a busy guy. However, he has done dishes, drove kids around, thrown together meals, etc. My sister Traci came right up when I was in the hospital. We had all the kids, going all different directions, that weekend and frankly needed help. She co-owns the second home in Prescott with us and loves, loves, loves our kids. We had not called anyone else due to my level of stress (of not knowing what was going on), difficulty speaking, and migraines. I did not want or need visitors, I needed rest. I had a Nazi Nurse that put a sign on the door and would not let anyone in. Traci was up strictly to help Justin. She was huge help. When Saturday came around and I realized Traci had to go back to work, I called my mom and begged her to come (not really). I always know I can call my mom or dad and they will be there. She was up the next day to help get the kids ready for school. Thank goodness. She had cooked, cleaned, drove me around, grocery shopped, took me to endless appointments etc. My dad was up for a week too. Luckily when he was up, I had one of my best weeks. My mom was back and fourth to her home since my step-father has had health speed bumps of his own. I think she spent a total of 4-5 weeks here. My sister Kristi has listened to me cry, has listened to my bad jokes, and listened to me laugh at myself. She is the one who made friends with a family of a Dr who has a wife that has been ill for several years (10+ years). They live in New Mexico. And by chance that Dr's wife, has Chiari. When Dondi (my other sister) was sick, several years ago, the Dr looked at her MRI and discovered she had the illness after several misdiagnosis. So, in a round-about-way, Kristi is the reason, I have hope for the future! Now Dondi, she has been sick her entire life. Migraines, lord knows what else because she does not complain, ever. She is the oldest and therefore is like a second mom to me. She has always been a caretaker to me. She listens to me whine and cry, and just says it is nice that someone else understands how she feels. I am so sorry that she has suffered in silence for so long. I am not as strong as her. I would have gone postal by now if I were her. At least I have a direction thanks to her and Kristi's friend. I am the baby and they all treat me that way still. I am 32 years old and they all love me, or at least I think they do! Next post I will talk about my endless appointments and er visits. You will be shocked. Animals may be treated better. Until then, love y0ur family. Live as you know if may just change.......

ER and Hospital Stay

When I arrived at the hospital I had a high fever, had a full on migraine with intolerance to light, body pain, word finding difficulty, slurred speech, right sided weakness, positive babinski (very bad), positive signs for meningitis (can't remember the sign name), tremors, and short-term memory loss. Being an RN, my fear was a stroke with a sudden onset of headache and speech change. A lumbar puncture was done, CT and MRI of the head. Stroke was ruled out. Bacterial Meningitis would take a few days to rule out and Viral meningitis would be ruled out by ruling out everything else (basically). The ER doctor started me on two antibiotics immediately and admitted me. It felt like day after day I sat in the hospital with no answers. I asked for a neurological consult on the second full day. The hospitalist seemed appalled that I would even ask for such a thing. Justin and I had not notified any of my family because we did not have any answers and we did not want to scare anyone. He did contact my sister Traci and she came up. When she came in the room and was with me for a while, she realized that I had several symptoms that were similar to a problem that my older sister Dondi has called Chiari Malformation and Occult Tethered Cord Syndrome. We discussed this with my AWESOME nurses. They printed up a symptom list. I was not around my sister when she was sick, as I was in nursing school at the time and living 3 hours away at the time. I went back and fourth on whether I thought I had the condition or not, at first. Now, I am absolutely sure that I have it! Although I have no official diagnosis. When the only local neurologist (that is accepting new patients) came into my room, the first thing that he said to me is "Is this Dr Carter?" I was so sick that I was not even able to kick him out of my room. Then he saw the papers on my bed that the nurse had printed for me with the signs and symptoms of Chiari Malformation. He said, "Do you have that?" I said, "I don't know, but I do have all of the symptoms". He picked it up and threw it to the side and said, "Get rid of that!". What a jerk. He said that he personally looked at my MRI and my cerebellar tonsils were not herniated. However, he did order another MRI of the head. What do you know? When I picked up my records, the report showed, "Low-lying cerebellar tonsils". That is the definition for Chiari Malformation. I stayed in the hospital for 5 days, was treated horribly, pretty much told by two Dr's in different ways that it was in my head. Left with no diagnosis. When I followed up with my Primary Care Dr, he advised me that I had Viral Meningitis. The PCP did not want to prescribe anything for my speech, tremors, or migraines so that he did not mask any of the symptoms prior to seeing the neurologist. It took me over a month to get into a neurologist. Unfortunately, I had to suffer intolerable migraines and tremors for that entire time with minimal vicodine. Mind you, my brain is being pulled down into my spinal column due to my spinal cord being too tight. And, when I turn my head from side to side, my brain is hitting the side of my skull!!!!

Medical Mystery Journey Begins......

I am currently under pressure mentally, physically, and emotionally....

On 4/29/2010 I started felling flu-like symptoms at work. When I went home I made dinner, as usual, then curled up on the couch with a sweater and blanket. Justin, my hubby, knew that I did not feel well but that was nothing new. I have often had times that I have felt bad. He took Jake, my step-son to their game. My two boys and I stayed home. Kyler was doing homework and Wes was playing Lego's. When I got up to go to bed, I was unusually stiff (in all my joints and neck), weak and unable to stand up straight. My knees ached, my head began to stab with a migraine, and the shiffering began. I layed in my bed and Wes layed next to me and played. Ky got into the bath. I suddenly noticed that my word finding became difficult and I was stuttering (or I thought, I later found that it is actually cerebellar ataxia). I asked Wes to ask me to say something back to him to see if I was speaking funny. When he said that i was speaking funny, I told him to calmly get his brother and that he may have to call 911. Bless Kyler's little heart. He got out of the tub so fast that he did not even drain it. He wrapped himself in a towel and came in to talk to me. He then called Shanna (my friend and hubby's ex-wife), to come and get Weston. Next he called 911. He stayed so calm throughout this whole ordeal. Amazing for a 12 year old, hormone filled, boy!