9/20/13

I know it's been a few days since I have posted. I have been questioning why the hell I am doing this. Why am I doing this to myself and is this all worth it just to be thinner. I am putting my body in so much pain it isn't funny any more. Between work that is exhausting, all these headaches, and all the stress I wake up every morning in so much pain. Lately it seems like every day is getting worse. I don't sleep any more between insomnia, and sever muscle spasms I can't think straight any more. I started taking magnesium for the leg cramps and upped the amount of water I drink but the spasms are just getting worse. I have been doing less and less workout time. I don't know if it's worth all the tears it's putting me through. I am not saying I am quitting this weight loss journey but I know I need to cut back to keep my sanity. I really need to get through this rough patch or in chiari talk flare up.

I am looking forward to having my MRI Monday and then making an appointment with the neurosurgeon to see if he has answers. I want to see if he can truly help me before I go totally insane.  

9/17/13

Last night I woke up with really bad leg cramps all night long. There were clouds this morning which makes my head hurt even worse. Work wasn't horrible, but at one point I felt very nauseous. At the end of the day my sister text and asked if I could bring her 7 year old as her other son had an appointment. Of course I said yes because he's at the same school I work at. I ran him home and she asked if it would be possible if I could come back at and watch him at 4 because his brother had another appointment. I ran home and to 7/11 I really needed caffeine. I went back over there, they left and I helped Zach with his homework. My sis came home and fixed dinner ( thanks to her big time). I missed picking Jake up in between there. We then went from there to the farm. He walked and took care of the steer.

We came home to ants all over the kitchen and of course no ant killer.  Jake grabbed the pine sol and started spraying. Then off to the store to get something for that. I bought a refill for something I already had at home. So here I sat trying my hardest to get the old sprayer off to put it on the new one. I couldn't find a screw driver that would work. I finally get the stupid thing off, but getting it back on was so hard for me. I ended up sitting here in tears because my hands didn't want to hold the small screw driver that it needed. I really hate this when you have a horrible headache, trying to do something that has to be done and no one to help you.

Tonight I am sitting here really hating chiari and all of the horrible symptoms that it causes. No I haven't done a workout and probably won't.

Chiari fact for tonight. Chiair can take away your fine motor skills, your thought process, your memory, and sometimes your independence.

9/16/13

I have been running every where today. I finally got to my workout tonight. I did the ab workout, legs, and cardio tonight. I swear these workouts seem like they are longer than 5 minutes per workout. I am totally exhausted. I am hoping to try to add one more of the workouts every night until I can get all of them in. Then I will try to up how long I do them.

Chiari info for today,

Is This Condition Hereditary?

Researchers investigated the genetic implications of the Chiari malformation with or without syringomyelia. A genetic prevalence has been identified in some families. Researchers continue to search for the gene(s) that are responsible for producing the Chiari malformation.

MRI scanning is recommended for family members who have signs or symptoms of the disorder.

Is 

Weigh in 9/15/13

I was surprised when I had stepped on the scale I hadn't gained any weight. I thought for sure after a week of not a lot of workouts and a lot of stress I would have gained 5 lbs. However I didn't lose any either and my measurements are the same. I am at a stand still. I don't think that 7 minute workout was for me. I thought I would search my apps and find something new and that might motivate me. I found one that I like so far. It's called daily workout, it has 6 things to choose from, ab, arm, butt, cardio, leg, and full. You can also choose if you want to do 5 minutes, 8, or a 10 minute workout. Today while laying in bed watching the Giants beat the Dodgers again I decided to try it. I started with the ab one, the hard part on this was the last exercise of planks. I then tried leg workout it was pretty good. I did the 5 minutes on both of them. It also tells you what exercises it will be doing with that workout. Tomorrow I will pick 2 of the other ones to try. I can keep the variety up and choose how long I want to spend or can do each day. Then eventually try the full workout. I typed in free workouts and it was the first one/ It's called Daily Workout Free. It has stick people in different color pieces, pink, red, yellow, green, blue, and purple.

Chiari fact for tonight,

After Surgery

This operation may take about 3 to 5 hours.  You may spend the night of surgery in the intensive care unit.  When you are stable, you will be moved to a general care floor for a total stay of about 3 to 5 days.

It is best to avoid coughing, lifting, and straining for the next 3 months.  If you should become sick with a severe cough during this time, a doctor may prescribe a cough medicine.  You and your doctor will decide when you should return to work.

9/14/13

Again no sleep last night at all. I swore to myself I was going to sleep until noon, or at least 12 pm eastern time. I woke up at 7:30 am my time. It really sucks! I would almost do anything for something that would knock me out.

Today I got some house work done but most of all I have been pretty lazy. I managed to get dinner in the crock pot. I took Jake to the farm and came. That's when my stomach started really hurting. I am not sure why. But hey, the bright side of it is that it might help on the scales tomorrow. I did manage to get in 15 minutes on my bike. I am in so much pain right now and can't seem to stay out of the bathroom. I know TMI.

Thank God it's Friday 9/13/13

I am so happy this long week is over with and I have the weekend it recuperate. I am totally exhausted physically and emotionally. All I can say is that June needs to get here fast so this year can be over. I am sure it's going to drag out and seem like it will never get here.

Again today I was on my feet most of the day. My feet are so swollen they hurt to walk on them. I also forgot to put my meds into my lunch bag today. I had to wait until I got home and by then everything hurt 10x times more.

After resting for a while I did manage 15 minutes on my bike and 40 crunches. I didn't think I could make it through the 7 minute work out but I could be off my feet while riding the bike.  Here are a couple of pics of my feet.

I seriously don't know how much longer I can go on like this without really hurting myself. I wish I had a better education so I could have a cushy job in so office and only had to get up when I need to, not have to.

I was sad that I had to call and cancel my neurosurgeon appointment for Tuesday but I haven't gotten my approval for my new MRI. He doesn't want to see my until I have that.

Chiari facts for tonight

During Surgery

A small amount of hair on the back of your head is shaved.  An up and down incision is made from the middle of the neck to the back of your head.  After more room is made for the back of the brain, the tissue cover of the brain (dura) is stitched together.  A dural patch graft is used which may come from your own tissue or from a man-made patch (Gore-Tex). 

9/12/13

After sleeping about 1/2 hour last night I woke this morning in extreme pain. I could barely walk, and keep my balance. I am not sure if it's my chiari or the workouts I have been doing or the combination of both. I sucked it up and got ready and went to work when I just wanted to go back to bed and hide. I had a very long and stressful day at work. My student was great in the morning, but in the afternoon he blew. Here I was chasing him around the library trying to keep him from throwing the books off the shelf. I did this for almost 30 minutes straight. I did make through the work day but I don't know how.

After work I headed to Walmart to pick up dog food for my son's dog and printer ink. Well they didn't have the printer ink so off to Staples I went I got my printer ink. When coming out of Staples the pounding in my head started thanks to the construction workers using a jack hammer across the street. My head hurt so bad that I my vision was blurring. I couldn't drive all the way home like that so I drove a short distance across the street to the $1 Tree. I wanted to get some ibuprofen to see if that would easy my pain so I could get myself home. I walked around in there for a while. I picked up a few other things too. When finished I went to my car and popped a handful of ibuprofen into my mouth and closed my eyes. I eventually made it home, then took 2 of my tramadol. Thank goodness dinner had been cooking in the slow cooker all day(I prepared it last night). But of course my day wasn't done.

I am sitting here now at almost 9 pm with a pounding in the back of my head and my ears. I haven't been online much today because my vision has been blurring easily. I am not sure if all of this was brought on by the workouts, or the jack hammer, or it's just the lack of sleep I haven't gotten in over a month now.

Chiari fact for tonight.

I guess I forgot to mention I didn't do any kind of workout thus far tonight and pretty much doubt I will be able to.

A Better Day

This new workout is kicking my butt. My knees, legs and upper arms are so sore. Like I said last night that must mean it's doing something. Now if it just shows it on the scale or measurements this week. Work was better today so I didn't have swollen feet.

For tonight's workout I changed things up somewhat. I didn't do the full 7 minutes but did 5 instead. The first exercise is jumping jacks, instead I ran in place. I think my bladder liked that better. Then was the wall sit, I found this a little harder tonight. It then calls for push ups, for me wall push ups do the same thing and easier for me to do. Instead of the chair step ups, I just did steps ups on the wii board. Then was the crunches, I think I have done so many of these it's like nothing doing 30 seconds of them. I just did more wall push ups instead of the chair dips. Next were planks, I didn't do so well on those. I did the squats, and lunges. I did more wall push ups because there is no way I am going to do the push up rotations.I tried the side planks that was a mistake. I fell almost on my face. I ended the workout after that.

Chiari facts tonight

What research is being done?

Within the Federal government, the National Institute of Neurological Disorders and Stroke (NINDS), a component of the National Institutes of Health (NIH), supports and conducts research on brain and nervous system disorders, including Chiari malformations. The NINDS conducts research in its laboratories at the NIH, in Bethesda, Maryland, and supports research through grants to major medical research institutions across the country.

In one study, NINDS scientists are trying to better understand the genetic factors responsible for the malformation by examining individuals with CM who have a family member with either a CM or syringomyelia.

NINDS scientists are examining individuals who either have syringomyelia or are at risk of developing the disorder, including patients with Chiari I malformation. By recording more than 5 years of symptoms, muscle strength, general level of functioning, and MRI scan findings from individuals who receive standard treatment for syringomyelia, researchers can obtain more information about factors that influence its development, progression, and relief of symptoms. Study  results may allow scientists to provide more accurate recommendations to future patients with syringomyelia regarding optimal surgical or non-surgical treatment of their condition.

AN NIH study is reviewing an alternative surgical treatment for syringomyelia. By examining people with syringomyelia, in which there is an obstruction in CSF flow, NIH scientists hope to learn whether a surgical procedure that relieves the obstruction in CSF flow can correct the problem without having to cut into the spinal cord itself. The NIH’s Management of Myelomeningocele Study is comparing prenatal surgery to the conventional post-birth approach of closing the opening in the spine and back that is common to some forms of CM. The study will enroll 200 women whose fetuses have spina bifida and will compare the safety and efficacy of the different surgeries. Preliminary clinical evidence of intrauterine closure of the myelomeningocele suggests the procedure reduces the incidence of  shuntdependent hydrocephalus and restores the cerebellum and brain stem to more normal configuration. At 1 year and 2 ½ years after surgery the children will be tested for motor function, developmental progress, and bladder, kidney, and brain development.

Stressful Day!!!

I woke up in so much pain from my new workout yesterday. I guess that's a good thing because I must have done something right...right?

Today at work I was on my feet and out in the heat from 7:15 am to 1:00 pm. I was trying to convince my student to go in and sit in his seat, but he had other things on his mind, like keeping me outside and moving. By the time I got home my feet and knees were swollen, I am sunburned, a bad headache, and nauseous(I can't tolerate the heat very well at all and it happened to be over 100 degrees here again today.

On a good note the doctor's office finally got back to the pharmacy. Today after over a week I finally got all my meds. Maybe now I can get this pounding in my head under control, my bladder, my acid reflux, and pain.

 I really wish for once a doctor could live in our shoes. Maybe then they wouldn't wait over a week to refill medication that helps us function, or actually prescribe something that actually works.

While I am on a bitching rant tonight. I really wish people who have gastric bypass wouldn't give anyone suggestions on how to lose weight. Especially when that person is trying to do it the hard way, and has a medical condition. Seriously, you cheated! You had surgery!

Another thing lately is that I wish my family or someone who is suppose to care would really listen. Instead if I mention how I feel(especially when they ask) they change the subject quickly without saying I am sorry, or how can I help. Instead of talking about some stupid ass game! Really, they get mad when they ask how I am and I reply I fine, but when I really tell them they don't seem to care. I am sorry but I am worn out, stressed, and haven't slept in over a month, well more than 2 hours in a night and that's not a straight 2 hours.

Some chiari facts tonight: Did you know things like coughing, sneezing, and yes even laughing can make a chiari headache 10 times worse?

 I got to complaining to much I forgot to mention that I didn't do the full 7 minute workout due to my swollen feet but I did do crunches, wall sit, and wall push ups.

9/9/13 New Work-out

Tonight I changed up things a bit. A friend(LeAnn) sent me a link to an app for a 7 minute work out. So I thought I would give it a try.

It starts out with jumping jacks. I did about 40 of them in the 30 seconds allowed. The only problem with this exercise is that my bladder doesn't like it when I jump, but I got through it. Next was a 30 second wall sit. I didn't have any issues doing that at all. Next, was push ups, I didn't great on those at all. I got in 10 but only 3 were probably acceptable ones. Then it had you do crunches, this was way too easy I got 70 done in the 30 seconds allowed. Then it went to chair step ups, I didn't attempt this at all. All of my chairs are very old and I would break something, (either the chair or me). Then it went on to squats, my knees suck but I managed 20 of them. Next, I also skipped chair dips, I don't trust my arms after doing the push ups. It then went to, planks, 30 seconds of a full plank which I did horrible on. Next was high knee lifts ,  those were easy, then to the lunge, I didn't do so great. I didn't even attempt the push up rotation. By now my arms are killing me but I tried the planks which went from one side to the other, I maybe got 10 seconds out of a minute. That is how it ended. I will try to keep improving on that and try to do them all.

9/8/13

I got ahead om my headache today but it took a lot of caffeine.  I don't drink coffee that often unless it's cold out(it was over 100 degrees today) or a frapp from starbucks(which is rarely) but I thought it might help my headache. I drank 2 cups of coffee and a coke, and of course about 6 bottles of water. It helped some but made me jittery. I am not sure why but I have been very shaky today. I thought it was my blood sugar but it wasn't. I have also been off balance today. I have almost fell on my face a few time and I did fall into the wash machine this afternoon. It's like my hip just freezes up and it doesn't want to move, then all of sudden I am trying to catch myself. I am hoping all my meds are filled when I get off work tomorrow.

As far as my weight it's the same as last week and so is my measurements. I am hoping that will change next week with me starting a new crunch challenge. I forced myself to get on my bike tonight and I made it 20 minutes.

Chiari facts for tonight.

How are they classified?

CMs are classified by the severity of the disorder and the parts of the brain that protrude into the spinal canal.

Type I involves the extension of the cerebellar tonsils (the lower part of the cerebellum) into the foramen magnum, without involving the brain stem. Normally, only the spinal cord passes through this opening. Type I—which may not cause symptoms—is the most common form of CM and is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition. Type I is the only type of CM that can be acquired.

Type II, also called classic CM, involves the extension of both cerebellar and brain stem tissue into the foramen magnum. Also, the cerebellar vermis (the nerve tissue that connects the two halves of the cerebellum) may be only partially complete or absent. Type II is usually accompanied by a myelomeningocele—a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord and its protective membrane to protrude through a sac-like opening in the back. A myelomeningocele usually results in partial or complete paralysis of the area below the spinal opening. The term Arnold-Chiari malformation (named after two pioneering researchers) is specific to Type II malformations.

Type III is the most serious form of CM. The cerebellum and brain stem protrude, or herniate, through the foramen magnum and into the spinal cord. Part of the brain’s fourth ventricle, a cavity that connects with the upper parts of the brain and circulates CSF, may also protrude through the hole and into the spinal cord. In rare instances, the herniated cerebellar tissue can enter an occipital encephalocele, a pouch-like structure that protrudes out of the back of the head or the neck and contains brain matter. The covering of the brain or spinal cord can also protrude through an abnormal opening in the back or skull. Type III causes severe neurological defects. 

Type IV involves an incomplete or underdeveloped cerebellum—a condition known as cerebellar hypoplasia. In this rare form of CM, the cerebellar tonsils are located in a normal position but parts of the cerebellum are missing, and portions of the skull and spinal cord may be visible.

Another form of the disorder, under debate by some scientists, is Type 0, in which there is no protrusion of the cerebellum through the foramen magnum but headache and other symptoms of CM are present.

9/7/13

I wasn't going to post because there isn't anything to really say. I have been in bed most of the day with pain and a headache. I got to take Jake to feed his steer 2 times, to take Troy to work, and we went to my sister's for dinner. I am home again and thinking of already going back to bed. I feel like total crap today. I hope tomorrow is a better day for me.

Fed Up With My Doctor

After work I stopped by the pharmacy and the doctor's office still hasn't approved my prescription refills. So I am stuck over the weekend with out my meds and this is going on a week now without them. My pain and headaches are increasing. I did call the doctor's office and they said they had been really busy and they would get right on it. Of course they lied. I just wish for once a doctor and their staff would have to go through what I have for the last week.

Even though I am not feeling the best and work was just wonderful I did make myself get in 15 minutes on the bike. I haven't yet done my crunches yet. I am hoping for some much needed sleep tonight and less pain in the morning. I know I am dreaming.

Here is the chiair info for tonight.

 Are other conditions associated with Chiari malformations?

Individuals who have a CM often have these related conditions:

Hydrocephalus is an excessive buildup of CSF in the brain. A CM can block the normal flow of this fluid, resulting in pressure within the head that can cause mental defects and/or an enlarged or misshapen skull. Severe hydrocephalus, if left untreated, can be fatal. The disorder can occur with any type of CM, but is most commonly associated with Type II.

Spina bifida is the incomplete development of the spinal cord and/or its protective covering. The bones around the spinal cord don’t form properly, leaving part of the cord exposed and resulting in partial or complete paralysis. Individuals with Type II CM usually have a myelomeningocele, a form of spina bifida in which the bones in the back and lower spine don’t form properly and extend out of the back in a sac-like opening.

Syringomyelia, or hydromyelia, is a disorder in which a CSF-filled tubular cyst, or syrinx, forms within the spinal cord’s central canal. The growing syrinx destroys the center of the spinal cord, resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs. Other symptoms may include headaches and a loss of the ability to feel extremes of hot or cold, especially in the hands. Some individuals also have severe arm and neck pain.

Tethered cord syndrome occurs when the spinal cord attaches itself to the bony spine. This progressive disorder causes abnormal stretching of the spinal cord and can result in permanent damage to the muscles and nerves in the lower body and legs. Children who have a myelomeningocele have an increased risk of developing a tethered cord later in life.

Spinal curvature is common among individuals with syringomyelia or CM Type I. Two types of spinal curvature can occur in conjunction with CMs: scoliosis, a bending of the spine to the left or right; and kyphosis, a forward bending of the spine. Spinal curvature is seen most often in children with CM, whose skeleton has not fully matured.

CMs may also be associated with certain hereditary syndromes that affect neurological and skeletal abnormalities, other disorders that affect bone formation and growth, fusion of segments of the bones in the neck, and extra folds in the brain.

9/5/13 Just Lazy

I have been out of my ibuprofen and tramadol for 4 days now. For some reason the doctor's office hasn't given the pharmacy their ok yet. I have called them and ask them to hurry up and get it done, but nobody ever listens to me. So, my headaches have been pretty bad, and the pain in my neck, back, and legs don't feel great either. I am hoping they fill my scripts by tomorrow. Tonight I don't feel like getting on that bike or doing much of anything. I did walk a lot around school today, and I am going to try to get my crunches done before bed time, which is coming soon.

Here is a little chiari info for tonight.

What causes these malformations?

CM has several different causes. It can be caused by structural defects in the brain and spinal cord that occur during fetal development, whether caused by genetic mutations or lack of proper vitamins or nutrients in the maternal diet. This is called primary or congenital CM. It can also be caused later in life if spinal fluid is drained excessively from the lumbar or thoracic areas of the spine either due to injury, exposure to harmful substances, or infection. This is called acquired or secondary CM. Primary CM is much more common than secondary CM.

9/4/13

I don't want to start all my post saying it was a long day but since I started back to work that's what every day has been. Today I didn't work but took my son to the doctor. I drove a little over 3 hours there and 3 hours home. My back and head is killing me tonight. That being said I did do 20 minutes on my bike but only 20 crunches.

I think starting Sunday I am going to start the 30 day crunch challenge again. I seem to do better when there is some sort of challenge. This way I can't say I don't feel like doing it, I just do it. It's probably what I need to keep me going.

Tonight's chiair information.

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.

CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebro spinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain.

9/3/13

Today has been the worst day at work since school starting back. I chased  followed my student around the whole school at least 5 times. I also had to physically remove him from class, he weighs around 90 lbs. I am totally exhausted tonight. The boys and my sister has kept me busy since getting off work. It was can you help Zach with his homework (she had some eye injections today) I can't see. Then the boys wanting rides here and there. Then going to the farm.

As far the bike, my knees are killing me and my feet are swollen, and I also feel like I had enough cardio for today. I have done 60 crunches though.

9/2/13

I woke up this morning with a killer headache and feeling very nauseous.  Maybe my headache wouldn't be so bad if I could get more then 2 hours sleep a night. I haven't slept more then 3 hours a night for over a month. Insomnia is part of chiari. I have been in bed for most of the day in a nice dark quiet room. I also have had my phone off most of the day or the volume off including the ringer. I only went out of the house 2 times both to take Jake to feed his steer.

My biggest problem with people when you tell them you don't feel well, they feel the need to try to call or text you all day. If you tell someone you're not feeling well and you have been in bed all day they should just leave you alone and not bug you.

I did do 40 crunches while laying in bed. After taking Jake to the farm I came back and tried to do my bike but was only able to get 10 minutes done. This bike is so loud and annoying when you have a headache. I wish I could find a cheap bike new or used that is quiet.

Here is the chiair facts for tonight:

Some people with Chiari malformations may have no symptoms. Others may have symptoms such as:

• dizziness
• muscle weakness
• numbness
• vision problems
• headaches
• problems with balance and coordination

Chiari malformations affect females more often than males.

Weigh In September 1st

I was really worried about stepping on that scale this morning with the way I have been eating. But I guess it wasn't all bad. I haven't lost anything but I didn't gain any. My waist and hips are the same, but I haven't been doing any crazy crunch/ab workouts, but maybe I should.

Tonight I helped Jake wash the steer. Then I came home and did 20 minutes on my bike. I also did 60 crunches tonight. Hopefully I am back on the right track.

Today kicks off Chiari Awareness month. So here is a pick of the difference between a regular brain and a chiari brain. Some doctors feel that this size of the herniation makes a difference in the pain, but in reality size doesn't matter. Someone with a 1 mm herniation may have more pain and symptoms than someone with a 14 mm herniation. Mine is at 7 mm, on my last mri.