Conquer Chiari Walk Across America 2011, Prescott

Mystery Diagnosis Chiari episode

The Discovery Channel Mystery Diagnosis episode featuring Chiari. Dr B was my surgeon for my tethered cord release.

http://www.chiaritvspecial.com/chiarivideo.html

I had never seen it. It was pretty good and shows how hard the patients have to push to get diagnosed. In this case, it was the mother. She watched her daughter wilting away before finding The Chiari Institute.

The day in the life of a Chiarian

First off, I do not want anyone to feel sorry for me. That is the last thing I want. However, I want awareness...True awareness of what we go through on a day to day basis. Usually when people ask me how I am doing, I give that faint smile and say "fine" since they really don't want to know how I really feel. So here is some of what may go on in the my day as a Chiarian:

I wake up with my family almost every morning at 6:30am. Some mornings I can not physically get out of bed but most, I force myself. I do this to have some sort of normalcy. My body is already a 7/10 on a pain scale. As I move, it gets a little better. The pain is in my neck, major joints, headache, nausea, feet, and hands. I find great pride in making coffee for my husband and lunch for my 8 year old. Hey, it may be the only thing I get done all day. I get to see my husband off to work, make sure Weston brushes his teeth makes his bed and the usual morning routine. This school year, I actually get to drive him to school in the mornings. Another thing I do every morning is make my bed. For some reason, it feels normal.

Wow, that is a lot of energy used or spoons as the chronically ill call it (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). I usually lay back down in bed or on the couch for an hour or so. Showering daily is a thing from the past. It is not physically possible. Then I prepare for whatever event I have scheduled for the day. By event I mean, what kind of doctors appointment do I have for today? Could it be my rheumatologist, endocrinologist, neurologist, primary care provider, internist, general surgeon, neuro surgeon, occupational therapist, physical therapist, cognitive therapist, visual therapist, or just the plain ol therapist to deal with all of this?

At first they had me going to so many damn doctors it was like a full time job. I had to say, "STOP! I am tired. And, this is getting expensive." Even at $20-30 co-pays, it was adding up to hundreds of dollars a week. Now, after seven months of therapies, I am down to Occupational therapy for fine motor skills of the hands. When I go out of the house, it is a major event. By the time I get home, I must lay down again. I do take medications, on a daily basis, to help prevent migraines. However, the pain from everything else is still there. I do not take anything else if I have to drive. So, I push through, just like most others with Chiari. It does not mean my pain level is any lower.

On days that I can not get out of bed, I sometimes am unable to lift my head. Other times, I am physically unable to walk. My brain tells my feet to move, and they do not move. It is a VERY scary thing. And other times, I just don't have the energy to move. As a nurse, I heard people complain of "chronic fatigue" and I often wondered if it was a real thing. Guess what? IT IS A REAL THING! And, I had asked my doctors for years about it but never pushed it. I thought they would just think I was "crazy". When I did talk to them they would say things like, "You are a busy working mother" or "You are going to school". But I could never get enough sleep!

When dinner time comes around, I quickly try to throw something together. By this time I am on sensory overload, my head is pounding and my pain is starting to increase. My tremors begin to also escalate. It is difficult for me to stay in the same room as my family due to lights, sounds, and other visual stimuli. So, I usually end up in my room for most of the evening. I hate taking any pain medications due to the way it makes me feel and don't usually do so until bed time. by then I am usually 9-10/10 on a pain scale and extremely nauseated. Many nights I cry myself to sleep. No one wants to live like this. It is so isolating, even from your own family.

Another thing that I have had to endure is cognitive function deficits. I used to calculate medications in the middle of the night. Now I struggle with helping my 3rd grader with his math homework.

These things are REAL and happening to hundreds of thousands of people right hear in the US (And, possibly millions around the world). It is sad that many doctors know nothing about it and some are not willing to learn. It is my goal to educate as many as possible. Many of my friends are in the healthcare field and have listened. For that I am VERY grateful. I get messages and calls from time to time stating this. I also get phone calls and emails from newly diagnosed patients that do not know where to turn or where to go. This give me hope and some purpose. I know that due to my sister and my work that at least 5 people have been diagnosed. That is something to be proud of!

Please join the fight by walking on September 17th. Find a walk near you at ConquerChiari.org or sponser me at
https://www.conquerchiari.org/ccwaa11/kellicarter

Woo Hoo--Helmet of Hope/ Conquer Chiari

Below I have copied and pasted some really good news for Chiarians. We will be getting some national coverage on September 10th. Jimmy Johnson will be wearing the Conquer Chiari logo on his helmet and has awarded a $10k grant. Yeah, that much closer to finding a cure!!!!


http://www.jimmiejohnsonfoundation.org/News/News-Archives/Two-New-Charities-Added-to-Helmet-of-Hope.aspx

Two New Charities Added to Jimmie's Helmet of Hope
7/01/2011
CONCORD, N.C. (July 1, 2011) – The Family Crisis Resource Center of Cumberland, Md. and Conquer Chiari are the most recent charities added to the 2011 Helmet of Hope, which Johnson will wear in the NASCAR Sprint Cup Series event at Richmond International Raceway in September.

Each organization will also receive a grant of $10,000.

Steve Richards of Performance Racing Network nominated The Family Crisis Resource Center of Cumberland, Md., the only program in Allegany County, Md. that provides comprehensive services to victims of domestic violence and sex crimes.

“The Family Crisis Resource Center in my hometown of Cumberland, Md. provides a safe haven for women and children of domestic violence. They can stay there, receive counseling, support to get through the legal system, and then are set up in an apartment/house when they're ready to leave the Center. My Mom has volunteered in various capacities with the group which has helped countless families in the Western Maryland area since 1978,” explained Richards on his nomination form.

Julie Carter of Billings, Mont. nominated Conquer Chiari, which is dedicated to improving the experiences and outcomes of Chiari and Syringomyelia patients through accurate information, raising awareness & sponsoring research.

“There are thousands and thousands of Chiari patients all over America,” explained Carter. “Most people have still not even heard of Chiari and have no idea what it is. It is a terrible, excruciatingly painful brain defect that is taking our lives and destroying them. I myself have Chiari along with all three of my daughters. We have had multiple surgeries and unfortunately have more to look forward to.”

“Conquer Chiari has been doing a fantastic job of representing us, educating us and gathering research and researchers together to try to help us,” added Carter.

In its fourth year, the Helmet of Hope program gives fans and media members across the country the opportunity to nominate their charity of choice to be featured on Johnson’s helmet for a select race. Each charity also receives a grant of $10,000. To date, the program has contributed close to $200,000 to 37 different charities.

Johnson will draw one winner from a list of media submissions and one from a list of fan submissions each race weekend through the New Hampshire event in July. The Family Crisis Resource Center of Cumberland, Md. and Conquer Chiari joins 24 Hours of Booty, the Flagler County Education Foundation, Lollipop Theater Network, the Tennessee Chapter of the ALS Association, the Ronald McDonald House of Charlotte and Els for Autism as charities that will be featured on the Helmet of Hope. The American Red Cross, which was placed on the helmet to kick off the event in response to recent tragedies across the nation, and Lowe’s Toolbox for Education, which the Jimmie Johnson Foundation partners with to fund Champions Grants, which are awarded to K-12 public schools in the hometowns where the Johnsons grew up and currently live, will also be featured.

Fans and media members may nominate their charity by visiting www.helmetofhope.org.

For more information about the most recently selected charities, visit www.familycrc.org and www.conquerchiari.org.

AN ENTIRE YEAR HAS PASSED

A whole year has come and passed since I was hospitalized with a "mystery" illness. The day of the royal wedding was the exact day. It also happened to be my oldest son's 13th birthday (April 29th). I totally forgot that it was the day that marked a year since I had become so ill. I started this blog since I had such a hard time talking (stutter), also so that I could let family know what was going on with my health, and also to help raise awareness in this strange illness. And, there have been over 9,000 hits! That is just AMAZING.

I have had many ups and downs. The tethered cord surgery has brought me some relief from leg weakness, and decreased the frequency of migraines, decreased my stutter, and so on. Best of all, I am released to drive short distances. However, there is no cure for Chiari or Ehlers-Danlos Syndrome. Chiari is a neurological condition so I have relapses and remissions. Everyday is still a struggle in someway or another but I am glad to have some relief. I continue to go to physical therapy, cognitive therapy, and vision therapy every week. It almost feels like a full-time job.

Dondi and I are headed to The Chiari Institute in a couple weeks. We both have imaging and appointments with Dr B, the neurosurgeon. This will be my third trip in a year. It is in Long Island and I have yet to make it into the city for site seeing. Maybe someday.

I would like to take a moment to thank everyone that has helped us in the last year. It is greatly appreciated and did not go unnoticed. I did write a lot of Thank You notes but was not always able to write them for everything that was done for us. Please know that we could not have made the trip to New York without your help! I am so happy we had the opportunity and that the neuro tissue is beginning to heal.

Tonight's episode of Grey's Anatomy had a child being tested for Chiari and when I was in the hospital last year, House had a man with Chiari. Maybe, we are starting to get the word out.

Please help me continue to spread the word by finding a Conquer Chiari Across America 2011 walk near you! Visit ConquerChiari.org to register now. Chiari is painful and debilitating. Help us find a cure and raise awareness!!!!

I am officially "disabled"

According to the social security office, I am officially "disabled". This is very much a blessing and I am relieved. However, this is a bitter-sweat pill to swallow. I worked EXTREMELY hard to get through nursing school. Now, I know that it was not normal to have headaches everyday of your life and to have chronic fatigue (or whatever you may call it). So, it was very amazing that I made it through nursing school, working, and raising children and as the nursing student body president.

In October of 2009, I was in a car accident. I did not realize it at the time but that accident changed my life forever! Whiplash and spinal cord damage, would show up later. It was also the trauma that initiated the problems with my Chiari. I immitiatly had problems swallowing, bowel problems, bladder problems (initiating flow and going up to 14 times a day), low back pain, etc. I went to doctors for all of the symptoms and was sent to seperate specialists for each seperate issue. The headaches worsened and increased in frequency.

Then on April 29th 2010, I was hospitalized for fever, headache, sudden onset of stutter, balance problems, and right-sided weakness. I thought I was having a stroke. They did a spinal tap in the ER on an already dehydrated patient. After 2 days and positive Babinski (not a good sign), I asked for a neuro consult. We also asked the nurse to print out the signs and symptoms of Chiari. She did so and I had all of the 47 symptoms except 3. On the third, fourth and fifth day, I ask to be transfered to Barrows. I was told that I was not "acute" enough. After 5 days, I was sent home with paperwork on headaches and no hope. After being sent home, I worsened and got the remainder of the symptoms, including not being able to walk unassisted. A month later, I picked up my medical records. Imagine my surprise when I discovered that one of my MRI's showed "low-lying cerebellar tonsils". I was forced to fight an uphill battle with no assistance from the medical community in Arizona. I was told "your mind is a powerful thing" and "you have none of the symptoms". So no one would treat my pain. It was a VERY dark and painful time.

I took my medical records and mailed them to The Chiari Institute. Thank goodness I had my sister, who also has Chiari, to help me with the paperwork and to direct me. I was accepted and was able to get diagnosed and have surgery. It seemed like an eternity but was a much shorter time then most people wait. Even when I returened to my primary care physician with diagnosis of tethered cord, ehlers-danlos syndrome, and Chiari, he still treated me awful. I think he may have just been overwhelmed by me. I finally was able to get a new primary care provider. She is wonderful and works with me. What a world of difference a provider can make!

In November of 2010 I had my tethered cord released and am doing much better. However, there is no cure for Chiari. There are only surgeries for symptom control at this time. So far, there are four members of my family affected by the surrounding illnesses of Chiari. It is debilitating and painful. I am glad that I was approved the first time for disability and I did not have to get an attorney. My family feels very blessed. Thanks to everyone that has been so supportive!

Registration is OPEN!

Registration has opened up! Please visit ConquerChiari.org to find a walk close to you. So far, there are 46 sites in 30 states.

If you are not able to walk, you are still able to donate on that same site. It is a charitable donation and usually can be written off on your taxes! (Check with your tax preparer.)

This is very personal to me. My sister and I are confirmed Chiarians and there are many others that are showing signs in our family. This is not a rare disease. It is just rare that the healthcare communities knows much about it! Please help me change that! I did not even get a diagnosis in Arizona.

As Always, thank you for your support!

Please contact me if you are interested! Corporate sponsors over $100 will be recognized on the T-shirts given out at the event itself!

Conquer Chiari Walk Across America 2011
Corporate Sponsorship Opportunities
The Walk Across America


The Conquer Chiari Walk Across America is an annual fundraising and awareness event comprised of a series of local walks held on the same day. In 2010, the event was held at 28 different locations, involved more than 4,000 participants, and raised over $330,000. We are proud to say that 87% of the money raised will be used directly to fund research projects and that only 13% was required for overhead and expenses. This year the walk will be held on September 17th, and it is our goal to raise at least $375,000 for research.

About Chiari Malformation:

Chiari Malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms. It can strike children and adults and cause crippling headaches, neck pain, balance problems, trouble breathing, numbness and weakness in the limbs, and a host of other problems. To date there has been very little research on Chiari and fundamental questions regarding its underlying cause, diagnosis, and treatment re
estimated that Chiari affects 300,000 people in the US.

About Conquer Chiari:

Conquer Chiari, known formally as the C&S Patient Education Foundation, is a 501(c)3 public charity dedicated to improving the experiences and outcomes of Chiari patients through education, awareness, and research. The Conquer Chiari website (www.conquerchiari.org) is the single most comprehensive source of information available on Chiari and related topics.
We are looking for corporate partners to help us achieve our mission. Please take a moment to review the sponsorship opportunities described on the next page. If you would like to sponsor the Conquer Chiari Walk Across America, simply fill out and return the attached form or sign up on-line at www.conquerchiari.org.
For questions or more information, please contact:
Rick Labuda, Executive Director, director@conquerchiari.org, 724-940-0116.

THANK YOU!

CCWAA 2011 Corporate Sponsorship Opportunities

Sponsorship Levels
National ($10,000+) – Company Name/Logo prominently displayed on T-shirts and signage at every walk site; recognition on Conquer Chiari website home page; verbal acknowledgment at every walk event; listed in press guide at every site
Signature ($1,000+) – Company Name/Logo largely displayed on T-shirts at local walk site; verbal acknowledgment at local walk event
Local Plus ($250+) – Company Name/Logo displayed on T-shirts at local walk site
Local ($100+) – Company Name displayed on T-shirts at local walk site

The C&S Patient Education Foundation is a Pennsylvania nonprofit organization (501c3), which is dedicated to improving the experiences and outcomes of Chiari & syringomyelia patients through education, awareness, and research.
C&S Patient Education Foundation is located at 320 Osprey Court, Wexford, PA 15090, and may be reached at 724-940-0116.
You may obtain a copy of the charity’s financial report by writing to the charity’s name and address. The charity may be exempt from registration as a charitable organization in a number of states and jurisdictions. However, if this charity is required to register and comply with laws related to charitable contributions, residents of the following states may obtain information as follows:
Arizona: Financial information filed with the Secretary of State, State Capitol, 1700 West Washington, 7th Floor, Phoenix AZ 85007-2808, is available for public inspection or by calling toll-free, 1-800-458-5842.
California: The official registration and financial information regarding the charity can be obtained from the Attorney General’s Web site at http://caag.state.ca.us/charities/.
Colorado: Charity’s registration number: 20033005084; Colorado residents may obtain copies of registration and financial documents from the Secretary of State by calling (303) 894-2680 or at www.sos.state.co.us.
FLORIDA: FL Registration # . A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE WITHIN THE STATE, 1-800-435-7352 or 1-800-FLA-Yuda POR ASISTENCIA EN ESPANOL.
Georgia: A full and fair description of the programs of C&S Patient Education Foundation and our financial statement summary is available upon request at the office and phone number indicated above.
Illinois: Contracts and reports regarding the charity are on file with the Illinois Attorney General.
Kansas: C&S Patient Education Foundation’s Kansas registration number is The annual financial report for the preceding fiscal year is on file with the Secretary of State, 1st Floor, Memorial Hall, 120 SW 10th Ave., Topeka KS 66612.
Maryland: Copies of documents and information submitted by C&S Patient Education Foundation under the Maryland Charitable Solicitations Act are available for the cost of copies and postage from the Secretary of State, State House, Annapolis MD 21401, 1-410-974-5534,(1-800-825-4510 within Maryland).
Mississippi: The official Registration and financial information of (charity’s name) may be obtained from the Mississippi Secretary of State’s office by calling 1-888-236-6167.
New Jersey: INFORMATION FILED WITH THE ATTORNEY GENERAL CONCERNING THIS CHARITABLE SOLICITATION AND THE PERCENTAGE OF CONTRIBUTIONS RECEIVED BY THE CHARITY DURING THE LAST REPORTING PERIOD THAT WERE DEDICATED TO THE CHARITABLE PURPOSE MAY BE OBTAINED FROM THE ATTORNEY GENERAL OF THE STATE OF NEW JERSEY BY CALLING (201) 504-6215 AND ARE AVAILABLE AT www.state.nj.us/lps/ca/.
New York: New York residents may obtain a copy of (charity’s name) annual report by writing to the Office of the Attorney General, Department of Law, Charities Bureau, 120 Broadway, New York NY 10271.
Pennsylvania: The official registration and financial information of (charity’s name) may be obtained from the Pennsylvania Department of State by calling toll-free, within Pennsylvania, 1-800-732-0999.
Virginia: A financial statement for the most recent fiscal year is available upon request from the Division of Consumer Affairs, Department of Agriculture and Consumer Services, P.O. Box 526, Richmond VA 23218; 1-804-786-1343.
Washington: A Notice of solicitation required by law is on file with the Washington Secretary of State. You may obtain additional financial disclosure information by contacting the Secretary of State at 1-800-332-GIVE.
Vermont: How Contributions Are Allocated Between Charity and Fundraiser. For information on how much of your contribution goes to the charity and how much to the paid fundraiser, contact the Vermont Consumer Assistance Program, Morrill Hall, UVM, Burlington VT 05405, tel. 1-800-649-2424, or the Vermont Attorney General’s Internet website, http://www.atg.state.vt.us/
REGISTRATION WITH A STATE AGENCY DOES NOT CONSTITUTE OR IMPLY ENDORSEMENT, APPROVAL OR RECOMMENDATION BY THAT STATE.

Conquer Chiari Walk Across America 2011

September 17th, 2011
Brownlow Trail/Pioneer Park
Prescott, AZ

Well, I said I would do it! Last September, I was pretty much bedridden when I heard about the Conquer Chiari Walk. It was so sad to find out that no one had organized a walk in Arizona in 2010. So, I decided last year, that I would organize a walk this year....even if it were from my electric wheelchair and/or walker. BUT GUESS WHAT? I no longer need them since I had neurosurgery on 11-16-2010 (tethered cord release)! I am still very ill and have good days and bad. But...I can do a lot of organizing from my bed. I also found out that there will be TWO walks in Arizona this year! Talk about awareness! Yay!!!!

For those of you that want to help, below you will find a list of things that I will need in the future. The websites are still being set up so, as soon as they are ready, I will let you know.

*Sponsers (Donations are usually tax deductable and donations over $100 will be recognized on the event t-shirts and at the event itself)
*teams for the walk
*team leaders
*item donations (ie: snacks for walkers, door prizes, water, etc)
*volunteers to work water stations
*volunteers for sign ups the day of the events
*volunteers with special talents (ie: face painting, baloon animals, dj, chair massage, etc)
*monetary donations
*does anyone know someone with a jumping castle?
*I will need a lot printing and signs so if you know anyone, please let me know.

https://www.conquerchiari.org/index.htm

Rhuematologist visit/Weston genetic testing

I saw the rhuematologist two weeks ago. When I was at the The Chiari Institute, they advised that I find out why my auto-immune markers were elevated. So, I just got in to see him. When I was admitted to the hospital, last April, I had a fever and a rash (along with many other symptoms). Lately, that rash has come back and especially if I am in the sun. I also have the classic "butterfly" rash of lupus across my nose and cheek bones and painless sores in my mouth. My fatigue has also been out of control. It is the one thing that has not improved, at all, since surgery! So this morning I was anxious, scared, excited for some sort of answer and some sort of treatment plan. When I saw the rhuematologist two weeks ago, he took nearly an hour with me and reviewed all of my medical records. It was nice to have a dr that actually knew what Ehlers-Danlos syndrome and Chiari was. I chaulk that up to him being a fairly new doctor but it was still very exciting! So my labs actually were improved over the last time but were still elevated. I have all of the outward symptoms of lupus but he "does not want to label me as having lupus yet." Bottom line, no answers...I am just $40 poorer and a little frustrated.

Weston stayed home sick with me today. He has been crying in pain from his ear. But, he also has a sore throat, runny nose, nausea, and headache. When I took him to the doctor, they called it a "screaming" ear infection and tosilitis. They did not even bother to swab it for strep since he has to take antibiotics for his double ear infection. I have set him up with endless popsicles, ice cream, and Gatorade. That alone made him feel a little better. On top of that we are alternating the tylenol and motrin to control the pain until the antibiotics start to work. The doctor also had a medical student. The doctor remembered us from the strep-throat incident before last. At that time, I was using a walker and getting ready to go in for surgery. She asked how everything went. I told her that I was feeling a lot better. Then I mentioned that I had been diagnosed Ehlers-danlos syndrome. She wants to send him to a geneticist. So she wrote a referal to see one. We will find out if Weston has EDS. Now, do I want to know? That is the question....

You don't look sick....the spoon theory

My goodness, this story has really hit home with me. I hope that all of my close friends and family read it and find it helpful at exlpaining how difficult it is to get through every single day when you are struggeling with illness. It has been copied and pasted below.

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.


As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

Gratitute quote

‎"Being in a state of gratitude actually creates magnetism, and of course, a magnet draws things to itself. By giving authentic thanks for all the good you now have, as well as the challenges, through this magnetism you'll start the flow of more good into your life." - Dr. Wayne Dyer

Chiari Poem/ relapse

A friend of a friend wrote this poem below and posted it on her Facebook. I just loved it. What it does not mention is the years and countless trips to doctors where they have no idea what is wrong with you. Thank goodness we have a diagnosis now! I am going to my primary care provider today. I have had a little relapse from Christmas. I was having migraines daily, tremors, difficulty walking, talking and fatigue. It seems to be subsiding. I started cognitive therapy last week. It is focusing on getting my life on a schedule and keeping a daily planners so that I do not forget important things. You know, like picking Weston up from school or doctors appointments. hee hee. So my schedule has been very busy. It consists of doing physical therapy three times a week and cognitive therapy two times a week. Luckily the cognitive therapist is also a trained speech therapist and helps me with that. Apparently it is the same area in the brain that is affected, the cerebellum. I hope everyone is recuperating from the Holidays. Sometimes it can be a little bit of a letdown after the build up to them. I have resigned from my position at the VA. That was VERY difficult for me. I am sure that contributed to my relapse. I had finally gotten into the position that I had wanted but my body just can not work right now. Hopefully after all of the rehabilitation, I will be able to work as an RN again. But for now, I just need to focus on getting better. It has been just over two months since my tethered cord release. I am still very tender. It has been nice to have my necks full range of motion and to be able to walk without a walker, and finally....being able to drive is FREEDOM! About a week ago I went to the grocery store, shopped, loaded the groceries, and then sat in my car exhausted. When I was sitting there, I realized that was the first time that I had gone to the grocery store all by myself in over 8 months. I was so exhausted that I was not sure that I could unload the groceries. Luckily, when I called Justin (my hubby), he was coming home to eat lunch and was able to unload the groceries. The cognitive therapist is helping me realize that I have to schedule in "rest periods" so that I do not run myself down and keep having relapses. In all, things seem to be improving and I love physical therapy. I hope all of you are doing wonderfully! Thanks for all of your continued support!


Chiari Poem
(to the tune of the 12 Days of Christmas...)

On the first trip to the neurosurgeon my doctor gave to me the diagnosis of Chiari.

On the second trip to the neurosurgeon my doctor gave to me two cognitive tests, and the diagnosis of Chiari.

On the third trip to the neurosurgeon my doctor gave to me three MRIs, two cognitive tests and the diagnosis of Chiari.

On the fourth trip to the neurosurgeon my doctor gave to me four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the fifth trip to the neurosurgeon my doctor gave to me five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the sixth trip to the neurosurgeon my doctor gave to me six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the seventh trip to the neurosurgeon my doctor gave to me seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the eighth trip to the neurosurgeon my doctor gave to me pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On my ninth trip to the neurosurgeon my doctor gave to me nine new prescriptions, pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On my tenth trip to the neurosurgeon my doctor gave to me ten numb digits, nine

new prescriptions, pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the eleventh trip to my neurosurgeon my doctor gave to me eleven centimeter incision, ten numb digits, nine new prescriptions, pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the twelfth trip to my neurosurgeon my doctor gave to me twelve weeks on sick leave, eleven centimeter incision, ten numb digits, nine new prescriptions, pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

Wayne Dyer blog

I have read an awesome article that has helped me imensly when I read it a while back and again this week. I have a new goal in 2011 and that is to work on having more peace in my heart. I have had many struggles in the last year with this awful neurological illness and need to work through them. Working on this one change, I believe can make a world of differnce. Wayne Dyer is a self-help guru that grew up as an orphan and now is helping countless others with his wise words. I think may help just about anyone that would take the time to read it. I read his blogs religiously. Below, is copied and pasted:




by Dr. Wayne Dyer

When you live at or below ordinary levels of awareness, you spend a great deal of time and energy finding opportunities to be offended. A news report, an economic downturn, a rude stranger, a fashion miscue, someone cursing, a sneeze, a black cloud, any cloud, an absence of clouds — just about anything will do if you're looking for an occasion to be offended. Along the extra mile, you'll never find anyone engaging in such absurdities. Become a person who refuses to be offended by any one, any thing, or any set of circumstances. If something takes place and you disapprove, by all means state what you feel from your heart; and if possible, work to eliminate it and then let it go.

Most people operate from the ego and really need to be right. So, When you encounter someone saying things that you find inappropriate, or when you know they're wrong, wrong, wrong, forget your need to be right and instead say, "You're right about that!" Those swords will end potential conflict and free you from being offended. Your desire is to be peaceful — not to be right, hurt, angry, or resentful. If you have enough faith in your own beliefs, you'll find that it's impossible to be offended by the beliefs and conduct of others.

Not being offended is a way of saying, "I have control over how I'm going to feel, and I choose to feel peaceful regardless of what I observe going on." When you feel offended, you're practicing judgment. You judge someone else to be stupid, insensitive, rude, arrogant, inconsiderate, or foolish, and then you find yourself upset and offended by their conduct. What you may not realize is that when you judge another person, you do not define them. You define yourself as someone who needs to judge others.Just as no one can define you with their judgments, neither do you have the privilege of defining others. When you stop judging and simply become an observer, you will know the inner peace I'm writing about here. With that sense of inner peace, you'll find yourself free of the negative energy of resentment, and you'll be able to live a life of contentment. A bonus is that you'll find that others are much more attracted to you. A peaceful person attracts peaceful energy.

Not being offended will mean eliminating all variations of the following sentence from your repertoire of available thoughts: "If only you were more like me, then I wouldn't have to be upset right now." You are the way you are, and so are those around you. Most likely they will never be just like you. So stop expecting those who are different to be what you think they should be. It's never going to happen.

It's your ego that demands that the world and all the people in it be as you think they should be. Your higher sacred self refuses to be anything but peaceful, and sees the world as it is, not as your ego would like it to be. When you respond with hatred to hate directed at you, you've become part of the problem, which is hatred, rather than part of the solution, which is love. Love is without resentment and readily offers forgiveness. Love and forgiveness will inspire you to work at what you are for, rather than what you are against. If you're against violence and hatred, you'll fight it with your own brand of violence and hatred. If you're for love and peace, you'll bring those energies to the presence of violence, and ultimately dissolve the hatred.

When Mother Teresa was asked to march against the war in Vietnam, she replied, "No, I won't but when you have a march for peace, I'll be there."

— Dr. Wayne Dyer

Double standard for stepmothers

Divorce is hard on everyone. First the loved ones that separated, then the children, then the extended family, and finally the step parents that come into the picture down the road. I have been a step child, my children have had step parent's, and finally I have become a step parent. And the hardest, so far, has been being the step parent.

"There is this double standard by which we suspect stepmothers of being wicked and selfish, yet expect them to be utterly selfless and loving to kids who are not their own, kids who are often hostile and rejecting for many years in spite of a stepmother's best efforts and intentions." Wednesday Martin, author of Stepmonster

No matter what you do, It is never good enough, you are never perfect enough, the gifts are never what they wanted, and so on.

My boys have step mothers that are probably not perfect either but I treat them as they are! I also encourage my boys to treat them with respect and love. When their step mothers buy them gifts, I call them and thank them. On mother's day, I make sure they give them a call. When it is their birthday, they get a call or a card. They are their "mother" in my absence. I respect them. They LOVE my children. If anything happened to me, they would gladly help raise MY CHILDREN! They would never take my place but they would help fill the emptiness that would be there. There is plenty of love to go around. More than one woman can love your children. Why is that such a hard concept for some to learn? Is it jealousy? Is it fear that someone will take your place? I have no intentions of taking any ones place. However, when the children are in my home, I do cook, clean, make them do chores, make them brush their teeth, make them obey the rules. If this makes me some horrible, evil human being, so be it. But I refuse to be disrespected.


"It is important that for wives and ex-wives to realize that you don't have to be the arch rival or best friend with each other. There is a middle ground and often times that's the safest position to be in." Kela Price

"Making sure the kids suffer the least amount of damage possible and that includes their stability in both households (chores and creating and/or maintaining relationships with all parents) truly takes ALL parents. also decreases the children's chances of using any "divide and conquer" strategies against their parents. When parents present a unified front, that child has boundaries and more importantly, he or she realizes that EVERYONE is working together for their best interest." Kela Price

In my life, I have had many trials and tribulations but have NEVER had any problems getting along with others. Heck, I still have the same friends from junior high and high school. My siblings and I have never even had an argument, as adults. It is not in me to fight or argue and takes much to probe me to that point. I have done nothing but love and respect my stepchildren and children and plan to continue on the same path. I am greatly saddened that someone may think otherwise but I will continue on just as I have but will not continue to be any ones verbal punching bag in 2011.

‎"Stepmothers, I urge you to take your power back. Your husband's divorce was not your fault and it isn't your responsibility to fix. You can be understanding and supportive without being every one's punching bag." Kela Price