Saturday, November 13, 2010
Sunday, November 7, 2010
RSD is becoming more and more common at a younger age. In past years it was thought that only adults could get RSDS (Reflex Sympathetic Dystrophy Syndrome). It was thought that children with unexplained pain were either making the pain up, it was physiological, or that they had another form of RSD that Dr's thought was based in the muscular system.
Wednesday, October 20, 2010
Due to a recent comment on my last post I thought I should bring this topic up. When You first meet someone whether it be a guy or girl that you are hoping to date or make friends with how much do you tell them about your Chronic Pain Condition? Do you tell them right away or do you try to hide the symptoms as much as possible until a relationship develops? Simply, how much information is too much and when should you let them know?
When I came out of my semi-remission at 17, I realized that I would have to let others know that I had a condition in which the main symptom was chronic pain. When people found out about the RSD they started staying away from me. I then went into my freshman year of college with the mindset that people would have to ask me what I had versus me telling them. I made friends but I was never sure when or how much I should tell them. I always just let them ask the questions and wouldn't go into any more detail unless more questions were asked. I have done this and so far it has worked.
When I first meet and went on my first date with J, I was extremely nervous. I was scared that he wasn't going to like me because of my RSD. Thankfully that was the opposite. He's been a major blessing in my life. I'm very honest with him about my RSD and how it makes my body feel. He helped me a lot when I was in a flair last week and I had a test. I could barely pick up a pencil and he was there to help me. I still have my answer only what is asked concept with him, but I feel like he understands more than others do.
How much you say to someone is up to you. For me the question and answer only what was asked works for me. If people are still curious and want to know more then I have no problem explaining in more detail. Some people are ok with a single answer while others need a more in-depth answer. What you choose to do and what works for you may not be what works for someone else.
Friday, October 15, 2010
A recent study that I just read shocked me but at the same time didnt. The article talks about how Love can be a potential analgesic medicine itself. The love can be between a significant other, friends, family, ect.
Here is the article; http://www.independent.co.uk/news/science/love-really-is-a-drug-ndash-and-it-can-work-a-treat-with-pain-relief-2106101.html
Any opinions or comments on this?
Since J and I have been dating I have noticed that when I am able to stand it, he is able to hold my right hand. My right hand / right arm is the worst of the two arms. This to me provides a little bit of evidence. It will be interesting if more comes out on this.
Saturday, October 2, 2010
He was painting rocks for Brad but decided to play
After Brad's memorial,J and I went to his Grandparent's house. Due to the stress of the day, the roads, and the long car ride my body was exausted and simply sick. I was happy to go to sleep and to get some rest.
Painting rocks for Brad
I have an amazing family that would come together like this. I love each of them so much and still love Brad even though he isnt on earth anymore.
Friday, September 24, 2010
I hope you are all doing well and enjoying these gorgeous warm days. Today is the first full day of fall, and it was 95 degrees here in Ohio. I wore a cute mini skirt with a tank top. I never believed that I would be wearing this in fall, and in Ohio of all places! I am enjoying the weather even though its playing havoc on my RSD. The constant change in the weather from hot to cold and back is extremly hard on my body. Add on the stress of school and no accomidations (long story and not too happy) it makes it hard but Im making it.
Earlier in the school year, the first week to be exact my Cousin who had Colon Cancer lost his battle. It has been a hard month for all of us but for his immediate family especially. The good thing is we are a close family and we are able to support each other while we are going through this. I will be going to West Virginia tomorrow to join the rest of my family to Celebrate my cousin's life. We are having a get together where he loved to go 4-Wheeling. I am happy that I get to join my family as I didnt believe I was going to be able to. J was able to get the day off tomorrow so we are driving down there tomorrow. Im thankful that I get to spend the day with my family as I miss them and believe it will help being with them.
Ill let you know how things go. Its been hard to post as classes have me busy. I hope to post about Wv soon and about how my classes are going. Also about why I dont have any accomidations right now even though I sent in the proper paper work ahead of time.
Friday, September 10, 2010
I hope you are all doing well. The best thing about today is that it is Friday! I had two classes this morning and didn't have to work which means I started my weekend early (yay!!). Before I go take a little nap, I wanted to write about the benefits of living on campus and how to do that with a chronic pain condition.
For many the prospective of leaving the comfort of home terrifies them. Throw in a chronic pain condition and that anxiety can go through the roof. Most people who have chronic pain also believe that they simply cant go to college. They tend to get this idea from the people around them. Keeping our minds busy actually helps distract us from the pain and keeps the areas of the brain active that can become permanently damaged from the pain if they aren't used.
Tips to Succeeding with Chronic Pain Conditions:
1) When you are on the tour of the college ask many questions. This may be about how big the campus is, about their Disability Services, how accessible things are, ect.
2) Talk to the Dean of the Field you are going into. This is important to do on the tour portion. You don't want to go to a college and then find out that the Dean isn't going to help you if you required accommodations. As a Nursing Student and someone who has RSD with a SCS implanted I know I will need accommodations when I do clinicals. Talking to the Dean, let her know this in advance. that I will not be able to lift patients due to my SCS but will be able to trade off and do something else in place of it.
3) Choose a major that YOU want to do. Many people may believe that physically or mentally you may not be able to handle a certain major. The best major to pick is what you love and what you are interested in.
4) Become familiar with the Disabilities Office Early. Having accommodations is leveling the "playing field" for us who need it. They are there to help you, so take advantage of it. The earlier you set your accommodations up (usually a couple weeks before school starts, you usually only have to do it once) the better. The school is able to get the paper work out to your Professors and set up the accommodations you need. I have accommodations and take full advantage of them, especially since my pain gets worse in the winter months.
Living On Campus:
In addition to what is above here are tips to living on campus.
1) I recommend living with a roommate. There are medical singles available at some colleges and also regular singles. I believe though that living with someone helps you become more social and helps you learn to live with someone else.
2) Get out and enjoy Campus Life! There is so much to do on campus depending on where you go to college you just have to find whats going on. If you are going to college where you don't know anyone then go and mingle at the Activities Fair, Join a Club, ect. The more you get involved the more people you will meet.
3) Stay on campus a few weekends: The last college I went to almost everyone went home on the weekends and this one people pretty much stay. Staying on campus a few weekends will help strengthen the bond between you and your new friends plus it will make you less home-sick.
4) Bring Comforts From Home: I know many of us with chronic pain have a hard time sleeping and well add a dorm bed and it makes it worse. Bringing a mattress topper, sheets and blankets where you like the touch and color will help tremendously.
5) Decorate: My room at school and room at home look nothing alike. In a dorm it may seem hard to put your own creative touches to the room when your not allowed to paint and nails and pretty much a no. I love to get peel and stick wall decorations from either the Dollar Store or Family Dollar. Each year I get different ones so my room is different every year. I also bring pictures of my family, boyfriend, friends, and dog. To make it feel like the space is mine.
6) The best thing about living on campus is that if you need to nap then you can nap. You are able to rest, do homework, pretty much anything between classes without having to drive. I love my 5-10 min walk to class each morning especially since I don't have to fight over a parking space.
If you are not able to attend college, doing puzzles, sudoku, and / or reading are great ways to keep your mind distracted from the pain of RSD, Fribro, ect. and keeping the brain active.