Letter to people without RSD

I found this on the RSD Sisters page.
Taken from another RSD Survivor Please add what you will I think it sums things up well

Letter to people without RSD:

Having chronic pain means many things change, and a lot of them are invisible.Most people do not understand even a little about chronic pain and its effects, and of those that think they know,many are actually misinformed.

In the spirit of informing those who wish to understand:These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being.I have to spend most of my day in considerable pain and exhaustion,and if you visit,Some times I probably don't seem like much fun to be with, but I'm still me, stuck inside this body.I still worry about school, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy".When you've got the flu, you probably feel miserable with it, but I've been sick for years.I can't be miserable all the time.In fact, I work hard at not being miserable.So, if you're talking to me and I sound happy, it means I'm happy.that's all.It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things.Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping.I am sounding happy and trying to look normal.If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour.Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today.With a lot of diseases you're either paralyzed, or you can move.With this one, it gets more confusing everyday.It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up.In most cases, I never know from minute to minute.That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating","being sociable" and so on, it applies to everything.That's what chronic pain does to you.

Please understand that chronic pain is variable.It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room.Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!"If you want me to do something, then ask if I can.In a similar vein, I may need to cancel a previous commitment at the last minute.If this happens, please do not take it personally.If you are able, please try to always remember how very lucky you are,to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse.You don't know what I go through or how I suffer in my own private time.Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct.If I was capable of doing some things any or all of the time, don't you know that I would?I am working with my doctors and I am doing what I am supposed to do.

Another statement that hurts is, "You just need to push yourself more,try harder".Obviously, chronic pain can deal with the whole body, or be localized to specific areas.Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine.Not to mention the recovery time, which can be intense.You can't always read it on my face or in my body language.Also, chronic pain may cause secondary depression(wouldn't you get depressed and down if you were hurting constantly for months or years?),but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm some where, or I'm right in the middle of doing something.Chronic pain does not forgive,nor does it wait for anyone.

If you want to suggest a cure to me, please don't.It's not because I don't appreciate the thought, and it's not because I don't want to get well.Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I.In some cases, I have been made sicker, not better.This can involve side effects or allergic reactions, as is the case with herbal remedies.It also includes failure, which in and of itself can make me feel even lower.If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it.There is worldwide networking (both on and off the Internet) between people with chronic pain.If something worked, we would KNOW. It's definitely not for lack of trying.If, after reading this, you still feel the need to suggest a cure,then so be it.I may take what you said and discuss it with my doctor. If I seem touchy, it's probably because I am.It's not how I try to be. As a matter of fact, I try very hard to be normal.I hope you will try to understand.I have been, and am still, going through a lot.

Chronic pain is hard for you to understand unless you have had it.It wreaks havoc on the body and the mind.It is exhausting and exasperating.Almost all the time, I know that I am doing my best to cope with this,and live my life to the best of my ability.I ask you to bear with me, and accept me as I am.I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick.I need you to visit me when I am too sick to go out.Sometimes I need you help me with the shopping, the cooking or the cleaning.I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life.You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening.It really does mean a lot

Wordless Wednesday

I had to one in here for each of them.

Witches Walk

Friday was Cameron's birthday and he was excited that the farm park was open on his birthday this year. The farm park does a witches walk and we had never been. Cameron's not big into scary things and a few minutes of watching Scooby Doo with daddy can have us searching for monsters for weeks. I wasn't sure what to expect for the walk but they went all out and it was done for small kids to have a non scary experience. When you first came in you saw that the park was covered in luminaries and there was floating jack-o-lanterns in the ponds. It was really cool and there was one path that everyone followed. We also got Splashdown passes for next summer for each kid.  

 
This is the Welcome Ghost. You will have to forgive me, the pictures are all on my phone which does not have a flash.

This was in the covered bridge. They had made it into a tunnel with low hanging objects for parents to duck through.

Another photo opp while on our way down the path.

Cameron meeting the Candy witch.

Caden and daddy seeing the candy witch.

They had decorated inside the barn and the kids got to search through the straw for a coin that would get them something special in the gift shop.

Beware of Bee's.

Getting tired waiting our turn for the fortune teller. (He wouldn't skip it so we waited forever!)

The fortune teller gave him a sticker but he didn't want his fortune told. Next time we will skip this one because she tells a fortune to every single kid which takes a long time. It is over for this year but is something we will look at doing again next year. It starts at 6 and we were there at 6:08 and the place was packed so I know to show up early next year. The bonus of this was, yes they got some candy but they got goldfish, stickers, and other non candy items that both Cameron and Caden could have!

Cake round one

As I'm working on Cameron's cake I thought I should do a write up on Caden's cake. This is the cake I made that everyone had. It has all natural food coloring on it so Cameron could have it also.

 

I also made Caden his own cake.

All he wanted was Percy off of it. Then he noticed that it tasted good.

I know he had a great birthday and I'm off to work on round 2 which is Cameron's cake.

Calico Beans

It was cool today and I was in the mood for calico beans. I can't think of making them without thinking of my Grandma Peel who passed away last September. She used to make them all the time and it is a great throw together and let it simmer meal.
You need:
1 pound ground beef
1/2 pound bacon
1 onion
1 can baked beans
1/2 cup brown sugar
salt and pepper to taste
(You can add mustard if you want)
Now this is where you can use up what is in your pantry
1 can butter beans (drained)
 1 can kidney beans (1/2 drained)
1 can chick peas (drained)
1 can black beans (drained)
1 can pork and beans
You can use any combination of beans that you have or what your family prefers. The above beans is what I used tonight when I made it.

Next you brown your ground beef and onions and when it is done drain and add your bacon. (Cooked if you are doing it on the stove.) Then comes the fun park of putting in all your beans. If you are doing it in the slow cooker dump it all in, mix and let it simmer on low all day.
If you are baking mix the cook beef, bacon and onions along with the beans in a 4 quart container and bake at 350 degrees for 45 minutes.
I did mine tonight on the stove and let it simmer about 30 minutes or so.

Slow cooker apple pie

I had some apples to use up and I came across this recipe and thought that I would give it a try. It was great and super easy to make. Cameron even helped me cut up the apples. It's not what you think of when you think apple pie but more like a coffee cake with apples in it. Here is the recipe if you want to give it a try.

8 tart apples, peeled and sliced (try Granny Smith or Golden Delicious apples)

1 ¼ tsp. ground cinnamon

¼ tsp. allspice

¼ tsp. nutmeg

¾ cup milk

2 tbsp. butter, softened

¾ cup sugar

2 eggs

2 tsp. vanilla

1 ½ cups Bisquick, divided

1/3 cup brown sugar

3 tbsp. butter, cold

Toss apples in large bowl with cinnamon, allspice, and nutmeg. Place apple mixture in lightly greased slow cooker.

Combine milk, softened butter, sugar, eggs, vanilla, and ½ cup of the Bisquick. Spoon over apples.

Combine the remaining Bisquick with the brown sugar. Cut cold butter into Bisquick mixture until crumbly. Sprinkle this mixture on top.

Cover and cook on low 6 to 7 hours or until apples are soft.

Serves 4.

It also makes your house smell great!