I'm not all doom and gloom, I have good days too!

Something that I have noticed after following the blogs and facebook posts of people with SPS and other chronic illnesses is that their lives tend to revolve around the fact that they are sick and they focus only on the negative.
I was sick yesterday, I was sick today and yes I will be sick tomorrow. I never know from one day to the next how I will feel when I wake up in the morning or even if I will be able to fall asleep the night before.
Since the whole reason for my blog was to track the progression of my disease, the sucesses and failures of treatments and to share my general experience living with SPS there will be alot of posts about my bad days. I wanted to take a moment to share some of whats going on in the days between those bad days.
I have a wonderful little boy. He's exceptionally smart and sweet. I have an awesome Chad. He is always there for me no matter what I need. I have a great job that I enjoy and provides me with great health insurance and other benifits. My family and I go out and enjoy our lives. We go on vacations and shopping trips, we go out to eat. We go to Karate lessons and cub scout meetings, we hang out with our extended family on weekends. I have friends and we usually go out on Friday nights.
What I wish for anyone who reads this, especially anyone who is living with a chronic illness... it consumes your body, it takes away your health but don't let it take all the joy out of your life.

Sleep Study

My neuro decided that my fatigue might be caused by more than just being anemic and being on muscle relaxers. She scheduled me for a sleep study. I couldn't actually write about it while I was taking the study, I was allowed to bring my cell phone but not the lap top. So I will write about it now.

There were two things about the sleep study that I was very anxious about. I've had a sleep study before and I've spent the night in the hospital before so it wasn't either of those two things. My number one worry was - I have to remove my acrylic nails and my number two worry was - I sleep with a stuffed bunny and no one at the clinic is going to take me seriously.

On the day of the study I left work early and went home to shower. Chad and I went to get something to eat. I had to be at the clinic at 6:30, its hard for me to eat that early at night but I was still a little nervous anyway so I wasn't worried about getting hungry later. I pulled into my designated parking spot at the clinic and buzzed for the nurse to let me in. It was really nice inside, not like a hospital at all, more like a hotel. I was given a tour; two sleep study rooms, the room where the tester... ummm tested, and a break room for the people who worked in the clinic.

There was one other woman there doing a sleep study. She was on her second visit. On the second visit they fit you for a mask and calibrate your CPAP machine so it will work best for you. I don't know if I will need a second visit or not, I haven't seen my doctor since the study.

I had a nice double bed to sleep in. It wasn't a hospital bed it was more like a bed you would have at home. They took some measurements and hooked up all the little sensors and then left me to watch TV until time to go to sleep.

I didn't sleep well at all. I'm a very light sleeper and every time the tester came in to make an adjustment or reattach a sensor that fell off I woke up. In the morning she woke me up at 5 am. She said she couldn't tell me any of my results but she did say that I only went into stage 4 sleep a few times.

The day after the test I was so tired. I tried to go to work but I left at lunch time. All in all it wasn't a bad experience.

Momma Appreciation Day

My son decided that we needed to have a Momma appreciation day. I asked him what a Momma appreciation day was and he said its just like mothers day except its this Saturday and we aren't inviting Granny.
We went for Chinese food and went to watch Despicable Me. It was an awesome movie, and we had a great time.

I just had my first experience fearing an open space yesterday. I was shopping with a friend. We started at the shops closest to where we had parked and walked along the sidewalk going in and out of shops. By the time we had made it to the end she was worried about me being too tired or in too much pain to walk back to the car. She offered to drive back and pick me up. I declined. So she decided that since the shortest distance to the car was to walk straight through the parking lot that would be the best option for me. We made it maybe 20 feet off the sidewalk and I completely froze. She asked if I was in pain and I said "No, I'm totally freaking out and I can't move" She offered to hold my hand but I told her I HAD to get back to the sidewalk. Once I was there I was fine. No more pain, stiffness or anxiety. It was so weird. I've talked to some others with SPS and that said that kind of anxiety or fear is very common with SPS. One even said she had fears of going new places. I told her I had a fear of driving on curvy or hilly roads because I couldn't trust that the road continued beyond where I could see. The jury is still on on if that is an actual SPS symptom or if its just regular crazy.

Tomorrow is another big day. Chad is out of town so while little man is at the movies with one of his friends I am going to attempt to clean the house. Wish me luck!

Grocery Day

I woke up around 10:00 this morning and by 11:30 I needed a nap. After a 3 hour nap I packed up the family and we made the 45 minute drive to get groceries. Buying the organic groceries is getting a little easier, I'm starting to recognize some of the packages and I know which stores I need to go to, to get certain items. I do wish however that there were a store that only sold organic items and had everything I wanted. Oh and was less than 45 minutes away. I can dream right. Today I was highly dissappointed that there was no organic cottage cheese.

My energy levels have really been fluctuating. Today I needed a nap a few hours after I woke up and again on the way home from getting groceries I was hit with this wave of extreme fatigue. As I was working on putting away the food and cleaning up the kitchen I got progressively more and more tired. At one point while I was making our supper I looked at Chad and told him my whole body was shaking and I wanted to cry. He told me to go sit down and not worry about the food but I was determined to finish. I feel a little better since I have had something to eat. When I got up to take my plate to the sink I wasn't able to lift my feet from the floor. I had to make tiny little shuffles and scoots. I'm in my chair resting now and hopefully I will feel better tomorrow. Tuesdays after a holiday are extra tough its like having two Mondays at once.

4th of July

I had a great 4th of July. We went to my Mom's house and had lunch. Yummy coca-cola cake. It was soooooo good. My sister cut way too big of a piece for me but it was so good I just had to eat it all. Of course I really shouldn't eat that much sugar. After most everyone had left I snuck off and took a nap. Then my son found me so I moved to the living room to watch Star Wars with everyone else. I just curled up and slept on the couch. I had to save up my energy for fireworks!

Fireworks were AWESOME! We spared no expense. We went to Chad's parents house, they live further out of town. One of the boxes (I believe the technical term is cake) flipped over. One shot went out towards the woods and we laughed. Then the box flipped again and it shot towards the road, we laughed. Then the box flipped and shot back towards the house. It hit the side of the house and bounced backwards, another one zipped by and hit one of our trucks. You've never seen a group of people scatter faster.

We've all decided that we are going back tomorrow and buy some more on sale. Woo Hoo!

I wanted to give an update to my last post. I have uped my dose of diazepam as I was supposed to. I am now up to 2 miligrams 2 times a day. I'm not any more tired than I was before. I'm doing well at work and I'm completely off the Dr. Pepper (YAY) I did start my organic diet. It's not as expensive as I thought it would be but its really hard having to drive 45 minutes into Nashville to buy it. I've been really pushing on Chad to buy me an upright freezer so I can buy more groceries at once. Organic groceries don't last long. :o(

Things have been going pretty well. Organic food and lots of water have actually been making me feel better. I'm still really tired. In fact I slept most of today.

So tired of being tired...

I'm so tired. I know that's no way to start a paragraph but really, I am! I wake up tired. I am finding it harder and harder to concentrate. I was supposed to up my dose of diazepam today, but I didn't. I couldn't! I don't think I will tomorrow either. At least the pain keeps me from falling asleep at my desk.
Today I drank almost 2 liters of Dr. Pepper. I wasn't supposed to be drinking it at all per my cardioligist but the neurologist said if it was the only way I could stay awake I could drink it in moderation... some how I think 2 liters exceeds "moderation".
I'm also supposed to be eating a primarily orgainic diet. I've been so tired that I've lost my appetite and have been eating only junk. I just had Chad go to Subway to buy what will be the 4th subway sandwhich I've eaten in 2 days. (I had him pick up an extra 6 inch for my lunch tomorrow) At least its Subway and not Burger King.
I'm going to bed. I'll try harder tomorrow.

I'm not that selfish... really I'm not

I am at the grocery store. I park my shopping cart at the end of the aisle to run down and grab something real quick. I squat down to grab a can of tomatoes and "Voila" my legs just do NOT want to respond to the stand up command and there I'm stuck. Aisle traffic comes to a complete halt all around me. No one can get their cart around. I look up at people with a smile and say "I just can't decided between salted or unsalted tomatoes" As if I am really so selfish that I would sit in the floor of a busy store and try and make that kind of decision. No the truth is "Ive fallen and I can't get up but I'm not going to tell you that because I would rather look like a selfish @$$ than admit there is anything wrong with me"

Introduction

My name is Amy, I am 32 years old and live near Nashville, TN. I was recently diagnosed with Stiff Person Syndrome. My first reaction was "Really, can't we call it something else? No one will EVER take me seriously."

You might wonder how I was able to take news like that so lightly. The truth is I have been sick for quite sometime and putting a name to what I have been feeling for so long doesn't change what I have been feeling. I was Amy when I walked into the neuro's office that day and Amy still when I left.

I have created this blog because I have desperately been searching the Internet for months trying to research Stiff Person Syndrome. I have since memorized the general definitions, diagnostic criteria, prognosis, treatment plans and a lot of medical jargon. This was very helpful in the beginning however there is only so much I can learn from reading the same thing over and over. So hopefully by sharing my own story, my own ups and downs I will be able to help at least one person realize, you may be One in a Million, but you are not alone.