Getting Organized

I strongly believe one of the best things a patient can do is become organized. This is far more true if you have a chronic condition, and will have multiple doctors. I spent all day Saturday printing out forms, journaling papers, and various other documents to help at doctor appointments.

Blogging day! 

This is my beautiful Trapper Keeper that I have designed to fulfill my various needs. I have forms subdivided by type, a small journal when I do not have access to my journaling pages, and a notebook with questions to ask doctors.

Trapper Keepers

I created these pages since I could not find them online. 

Appointments

Allergies 

A very useful pain chart. 

The actual page is rather large. Open word and adjust the size to save on paper and ink. 

Pain Scale

This is the question journal I had written up. The questions came from one of my support groups. 

It is incredibly important to keep all of your records together.

Ask for all print outs, and any image CD's. 

The next two images come from WebMD. 

WebMD has many forms that can come in handy. 

Forms

Getting Organized

I strongly believe one of the best things a patient can do is become organized. This is far more true if you have a chronic condition, and will have multiple doctors. I spent all day Saturday printing out forms, journaling papers, and various other documents to help at doctor appointments.

Blogging day! 

This is my beautiful Trapper Keeper that I have designed to fulfill my various needs. I have forms subdivided by type, a small journal when I do not have access to my journaling pages, and a notebook with questions to ask doctors. 

I created these pages since I could not find them online. 

Appointments

Allergies 

A very useful pain chart. 

The actual page is rather large. Open word and adjust the size to save on paper and ink. 

Pain Scale

This is the question journal I had written up. The questions came from one of my support groups. 

It is incredibly important to keep all of your records together.

Ask for all print outs, and any image CD's. 

The next two images come from WebMD. 

WebMD has many forms that can come in handy. 

Forms

Long night, and morning gardening

08/01/2016
Let's be honest nights can sometimes suck! No drifting to sleep in bless full wonder. No getting comfortable. Oh, and if the pain were not bad enough I can multiple heart palpitations! Nothing like drifting off to sleep, and then being ripped awake by a horrifying symptom. If that were not bad enough I also kept my husband awake! Sorry!
Despite, sleeping horribly my morning was wonderful! I was able to put the rest of the seeds in the ground for fall harvest! I can not wait to eat some home grown pumpkin, and butternut squash.

08/02/2016
Today I actually felt halfway decent, so I used the day of how I saw fit. That sentence would make you think I had a big hoorah kind of day, nope it was down to business with laundry. Unfortunately, the washer broke so we had to go to the laundromat. People if I leave you with one tip today this is it, buy a washer! If you live in a small apartment look at a compact washer that you can hook up to the sink. Think about the money you would save! My mind was blown by the exorbitant cost of doing just four loads! After laundry was done I watched a little television, and then went to bed. I watched Netflix, and crocheted (I am working on something for special people in my life) until my husband returned from work.

08/03/2016
That brings me to today. Last night was brutal. I hurt, perhaps due to overdoing it yesterday, and my husband sounded like a mack truck doing 70 on a highway. If you did not get that last reference, my beloved snores! Sometimes, I think living right next to a train track would be quieter. However, my husband is amazing and I would not change a single thing about him, yes that includes the snoring. Needless to say, I ended up sleeping most of the morning, and part of the afternoon because I had work late tonight.
I am rather blessed with my job! I get to sit, watch Netflix, and crochet. For a Chiari patient this job is awesome! I do not have to deal with loud noises, the temperature is great, my co-workers are amazing, and I get to take it easy! I love it here, and my boss is AWESOME! I also get to meet really great people. However, today was a little rough.
I sometimes deal with irritable bowel syndrome (IBS), probably due to Chiari. Gross, right?!? Today, was a bad day to deal with IBS. My stomach hurt, and I knew what was about to hit. I look at the clock and it is 530pm. NOOOO!!! I had to be at work in less than 30 minutes. I text my boss, and she tells me it is okay she can have someone fill in for me if need be. I told you she is cool! Thankfully, the worst of the bout happened before work. Chiari is fun, is it not?!? If we do not have to deal with other aches and pains we have to deal with stomach issues as well. Thankfully, I made it to work just 30 minutes after my shift started, but today was not the day to deal with IBS!

Ice Ice Baby

Yo, VIP, let's kick it! Ice Ice Baby, Ice Ice Baby. Now that I have that utterly ridiculous song stuck in your head let me get down to the meat of my post. As previously mentioned I have cape pain. This pain is caused by nerve pain. Tonight, the pain is insane in my chest. I have tried one remedy after another, and only one remedy has not failed! ICE! Yes, while I was carefully implanting that song into your brain I was sitting here covered in ice. Sometimes I leave an ice pack on for a few minutes, and other times for 20 minutes. I use a homemade reusable ice pack, so I never run out of ice. If you are suffering from nerve pain I would suggest giving ice a try, and see if it may ease your pain. Also, remember what works for one person may not work for others. Comment below if you have tried ice, and share some tips on how you have relieved nerve pain. 

Homemade Ice Pack (I use a foodsaver to make mine)
Foodsaver ice pack cut to size
1:2 ratio of water to rubbing alcohol (If you use one cup water use two cups of rubbing alcohol)
Food coloring, optional and only a couple of drops 

Remove as much as possible by using the foodsaver. Seal and you are done. 
I have had the same ice packs for nearly two years, and they are not only a money saver, but a lifesaver! 

Welcome to my journey.

I created this blog in hopes of not only letting people into my journey, but also to help inform other patients, caregivers, or family members know more about the disorder. Yes, this is my journey, but a lot of what I go through many Chiari patients also experience. I also have Syringomyelia, degenerative disc disease, and a compressed thecal sac. If you have not figured out this creates a considerable amount of daily pain. I only recently discovered I have these disorders through MRI's, and a lot of heartache. At first doctors blamed my symptoms on Fibromyalgia, and later a possible diagnosis of MS. It was not until the possible diagnosis of MS that through an MRI Chiari was discovered. Then later it was an MRI on my entire spine, and this was when the other disorders were discovered. I believe that I have had this illness my entire life, but only recently (late 20's) that it became worse, and then in my 30's the pain became nearly unbearable. I have what they call CAPE pain, the pain radiates into my chest, around my ribs, and on both sides of my shoulders. I have a rare symptom of auditory and visual hallucinations. I trip over my own feet, and sometimes I can not walk. I am often beyond words tired. The pain wakes me up at night. I also have heart palpations. Despite, everything I go through I find beauty in everyday life. I love life. I love life so much that I am even going to school to be a geologist! Yes, despite everything I find time to go to school for something I love.