The Semester Is Almost Over!

Hello Healers!

I hope you are doing well. The last few weeks of this semester has been incredibly busy. I will be happy when the semester is over and I will get a little break. I still have a few weeks left and a week of finals to get through, so any prayers would be appreciated.

If any of you have suggestions for blog topics please feel free to send me an email at erikkaberry@yahoo.com. Be sure to put "Blog Topic" in the subject in the email since I am getting a lot of emails lately and I dont want to delete any of your ideas.

Sending Healing Thoughts,

*Erikka*

RSD At A Young Age

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.

Since more PM's are realizing that RSD can and do happen to present in children more research is being done on new treatment options and the long term-effects of RSD. It is true that children who are diagnosed earlier have a greater chance of going into remission but going into remission doesn't mean your 100% free of having RSD. Once someone has RSD even if they are in remission, it is easier for it to spread and come back with any injury he or she obtains later in life. This can be hard for children and teenagers who want to be active with their peers but have to be careful.

At this point little is know what goes on with those who have RSD long term. RSDSA is currently conducting a survey to try to understand what goes on. The results may not be published for a good while still. I have several friends who have had RSD about as long as I have and have gotten it around the time I did. Both girls seem to be having the same internal RSD symptoms like I have. One girl got diagnosed with RSD in the stomach like I did and the other girl just recently got diagnosed with RSD in her kidney. It makes me wonder if this is one of the long term effects of RSD.

How Much is Too Much?

Hello All!

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.

How Love is Helping Fight Against Pain

In recent years new and more research has been coming out about pain.

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.

Brad's Memorial

J and I

Hello Health Nuts!!

I hope you are all doing great. Life for me is busyer than ever. It seems that I get done with one subject of homework only to start another. I have at least 1-2 papers due a week, math homework due every other day (M-W-F) and constant studying for my Nutrition and Organic Chem classes.

Last weekend J and I went down to West Virginia for my Cousin Brad's Memorial. It was so touching that 40-50 people would come out to honor his short life. The place where part of his ashes were scartered was absolutely beautiful. I had never been there before, and wasn't use to the roads we had to go on to get there. There was tons of food, ATV rides, and telling stories about Brad's life.

There was a beautiful memorial constructed at the top of the hill. We all gathered there and had a little service. I was put in charge of the little kids painting rocks to put around Brad's memorial on the hill and we did this after the service.

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.

Hard Time For My Family

Hello All,

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.

Living on Campus With a Chronic Pain Condition

Happy Friday!!

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.

Healing From Surgery / Birthday

Hello Healers!

I hope you are all doing well. I am recovering from my recent surgery pretty well and anxious to get my stitches out soon. They are getting dry and itchy and just not fun to have. I am a little score still and cant lay on my right side that long, or wear clothes yet that squeezes my hip area. I am happy though that I have most of my energy back even though I get completely exausted at the end of the day still.

I started back at school last Monday. I transfered to another college as I knew I couldnt make myself go back to the one I previously went to. It didnt make since to me that I was going to a college that I felt like I was going around in circles and couldnt get out no matter how hard I tried. I studied to the point to that I was making myself physicaly sick with making the RSD in my stomach worse and getting horrible tension headaches. They also wouldnt accomidate me foodwise so why pay all the money I was to go to that school?

I love were I am going now. I live in a suite with 5 other girls, 3 of the girls have their own rooms while I share a room with one of them. The girl I share the room with is also a nursing-transfer student so we are in the same place and taking most of the same classes.

My mom threw me a little BBQ / Birthday Party today. Some of my family and family friends came over to enjoy the last weekend of summer even though the weather was already a bit cool. We went to Whole Foods yesterday to get my Vegan Cake which was delicious. I recieved a few gifts for my dorm, to get my hair done, and some cards. J is taking me out to dinner tomorrow on my actual Birthday. I cant believe Im gonna be 21! I will post pictures after tomorrow.

Thank you everyone for the well wishes from my surgery. I am healing from it wonderfuly and my RSD pain is undercontrol once again.

Surgery Update

Wednesday was my Spinal Cord Stimulator Battery Revison. I was schedueled to go in around 3 in the afternoon. I had recieved a call from my Dr's office letting me know that I was able to come in earlier since the person who was suppose to have surgery before me cancelled or their surgery was cancelled. This of course excited me since I had to fast starting midnight the night before and I was hungrey and thristy since I wasnt aloud to drink anything either except tiny sips for pills.

Everything with the surgery went well. It was around 7 or so that evening that I got released. My side was hurting but it was still a bit numb from the numbing shots I was given. The day after the surgery when the shots really wore off I was hurting. I was hurting because of the post-op pain, my battery is working wonderfully. My boyfriend came over that night which helped alot. Im not one to lay in bed day in and day out so when Im forced to due to surgery pain I get bored fast. Im not a fan of movies since I know I can be doing something else and more productive. I made a stake of movies next to my bed and well, they havent been watched. J and I finally figured out how to use the Movies on Demand feature and watched a movie the first night he came over. He came over again yesterday and since I was still hurting a good bit we hung out around the house. I did end up venturing out to get a bite to eat which made my day.

Like I mentioned a bit earlier in this post my new battery is working amazingly well. I am so happy I got the re-chargable battery vs the 3-5 yr battery. Now that I have this new battery I can tell that mine was dying and Im not scared to turn it up to get the relief I need. I have noticed that I have recovered faster from this surgery than anyother one including the revision I have done last summer. I think its because of being Vegan and eating more health oriented type of foods. I have been making sure to get more protein during this time since Im healing from surgery.

Pre-Op Tests and Rechargable SCS Battery

Hello All!

I hope you are all liking the new design of my blog. I was creative one night and instead of pulling out all of my scrapbook supplies I came on here and did a new blog design.

I had my Pre-Operative tests done today and surgery is a go on Wednesday. It is not scheduled till around 3:15 in the afternoon so I know that I am going to be pretty hungry by the time they knock me out. I always tend to believe that the fasting and IV are the worst parts of procedures. My body just cant go without food that long and getting an IV well that's another story.

I am excited though that I will be getting the rechargeable Spinal Cord Stimulator Battery so that I wont have to be going through this for at least 10 yrs or so (last how long the battery is suppose to last). I will have to charge it at least once a month or more depending on how much voltage I use but that is worth it to me not to be having to go through this every few years. The battery I have in now was suppose to last 3-5 years and Ive had it less than 3. It will be officially 3 years in December but my Dr and nurses are surprised how quick it went.

I was explaining to J (my boyfriend of 2 months) about RSD and the SCS and he was curious just like everyone is when they first here about it. I have been blessed though with a boyfriend who has taken the time to ask me questions and understand that there are somethings I am not able to do but just because I have RSD doesn't mean I cant be an active participant in life. I think we all need to keep in mind if you or a loved one has a chronic illness / chronic pain doesn't mean their voice shouldn't be heard or they cant participate in activities. We love to have fun just like everyone else.

For those who are about to be getting the SCS and would like to contact me please feel free to. It was the best decision I made and I still love the SCS today. It has helped me gain my life back and there was no way I could have done that without it. I don't feel like I "gave into it" or "settled" for it. Its an amazing piece of technology that people with Chronic Pain have been given access to.

Healing Thoughts to All!


Email: erikkaberry@yahoo.com

Surgery Date

I had a last minute Dr's appointment yesterday where we discussed my upcoming revisoin surgery for my SCS. I am happy to anounce that even though my Dr. isnt able to perform the revision himself that another Dr is willing to do it. If insurance approves the surgery everything should be a go for Wednesday with the pre-op be the Monday before.

With the revision surgery being on Wednesday will give me time to recover before going back to school on Sunday. Im not too worried especially since this is just a battery replacement.

Surgery + New Job

On Saturday night I was adjusting the settings on my Spinal Cord Stimulator. The remote in which I was adjusting my battery informed me that my battery needs changed. This is a bit problematic especially since Im going back to school in two weeks.


Another problem is that my wonderful Doctor of 8 1/2 yrs got into a car crash a couple weeks ago and isnt able to use his hands at the moment. I will update when I get my surgery date as his Nurse Practitioner is trying to squeeze me into the scheduel before I go back to school. I may only have a few days to recover from a same-day surgery before I go back.


For some good news I found out last week that I got the Book Store Job on Campus that I really wanted. It is not concidered work-study so I may have to work more and the hours may change week to week but I am not sure of that. I train on Wednesday and with my SCS battery starting to go Im really nervous. I dont want to turn it up more than I have to but I am hurting more since its not working properly. I am thankfully still getting coverage (please pray it stays that way till the surgery).




*Sending Healing Thoughts*

Being Labeled as "Sick"

When someone is searching for a diagnosis for their chronic pain or they are already diagnosed they are automatically labeled a "patient". When someone is labeled a patient they get this mindset that they are sick. Normally when someone goes to the Doctor they are truly sick. The definition of being sick is your body's immune response fighting against bacteria that either causes pneumonia, influenza, the common cold, ect.


People who are being treated for their chronic pain feel like they get into a rut. Once you get into the unending Doctor's appointments and daily medications you do truly feel sick. It gets to the point that people wonder if its ever going to end and if a depression starts this feeling of "sick" gets ingrained even more.



A lot of those who have Chronic Pain there family and friends tend to "baby" or not expect much out of them. This leaves them in the patient or sick roll. With Chronic Pain especially RSD it is hard to do everything you want or need to do. For those with advanced RSD family members may have to assist them with their daily activities. Even those with less advanced RSD many family members may see that their sister, daugher, loved one; is not able to do what they once were able and get the "sick" or patient mindset.




I have never thought myself as sick. I have RSD but I am not sick. RSD is a dysfunction of the nervous system. We may not feel well at times due to our pain but we can still enjoy ourselves. We can love our lives and have Chronic Pain. Thanks to medical advances people with pain both acute and chronic are living more full filling lives.

Loving Yourself

For the Average American who is bombarded with the media Loving Oneself is hard to do. Throw in a Chronic Illness or Chronic Pain and high Self Esteem and Loving Oneself is pretty much non-existent.

All people whether they have a Chronic Illnesses / Chronic Pain or not have a choice to make and that is to Love Oneself. That may seem impossible due to life's circumstances and what the media says we need to look like to be perfect and appealing to the opposite sex. Honestly we just need to Love Ourselves and the glow and confidence you have will show your partner or future partner how you take care of yourself, how you love others, and how you will love him (or her).

Here are Tips to Loving Yourself:

1) Be Honest with yourself about how valuable you are or you think you are - After I started taking care of my body better I treated myself better. I got rid of most of the negativity in my life.

2) Share with others - Some people with Chronic Pain or Chronic Illnesses are not able to work but volunteer to get the fulfillment out of it. For me I like to work or do some activity to stay busy while being able to help others.

3) Forgive Yourself - If you were ever told you weren't worthy or were compared to someone you despise, its not true. You are worthy and you are your own self.

4) Learn to let go - A lot of people have had a bad childhood / beginning / moments and have a hard time opening back up. Sometimes its best to talk about those feelings with someone which helps you let them go.

5) Love is a feeling not a choice - Choose to love yourself

6) What is feeling your emptiness? - Fill that place with love instead of objects, food, alcohol, ect.

You don't have to be miserable living with a Chronic Illnesses / Chronic Pain. We can be just as happy as those who are completely pain free and healthy.

Keeping Positive With a Chronic Illness

Many people who develop a Chronic Illness or Chronic Pain have a hard time staying positive during their treatment and life through out their illness. Sadly many Dr's still believe that these conditions such as RSD are caused by depression when depression and other mental disorders develop afterwards.

Thankfully I avoided going into a depression when my RSD came back. I believe this was because I had the support of my family, friends, church family, and online friends. It greatly helps to know that you have support from all these people. Not everyone who develops Chronic Conditions have this support though. So it helps when Movie / TV stars like Michael J. Fox who have Chronic Conditions show us that it is possible to be possible and live a full life.

I recently read an article in Reader's Digest from May 2010. They did an interview with Michael J Fox about a new book he has coming out and how he is able to stay positive. I recommend that if you haven't read it that you check it out.
We all go through a mourning phase when we find out that we have a Chronic Illness or Chronic Pain, this is very normal. Being angry that we can no longer do things that we once were able to do is the next phase. Acceptance is the last phase in mourning. It took me a while to accept the fact that I had RSD. I didn't admit to others I had RSD until people knew something was wrong when I was 17 and I had it since I was 12. Now I love my RSD, yes I love it. I hate the pain but its taught me so much and its made me, me. I also love the fact that its given me the drive to do things some people don't believe I can achieve because of it.

Once you accept your Chronic Illness / Chronic Pain its going to help your treatment plan. If your constantly fighting against your Illness or Pain than your going to be stressed out and in more pain. I really started loving my life its reflected in my completion, the way I act with family and friends, the way I view life, ect. I really don't like when people call me "sick" since I'm not. I don't have the stomach flu, pneumonia, strep throat, ect. Unless you really do have an infection or are classified "sick" by a Dr you are perfectly healthy, your nervous system is just a bit messed up. Yes I still have pain but I'm less apt to focus on it during the day. My SCS remote and meds are with me to help bring the pain down so I'm able to enjoy my life like life is suppose to be enjoyed.

Peace, Love, Happiness

Always,

Erikka

Keeping Busy

Hello Healers!!

I apologies for the lack of communication. I have been having a great time with my family, friends, and boyfriend that Im exausted when I get home. I have been pushing my body and flair one or two days a week but to me its been worth it. Hanging out with friends has been healing for me.

About two weeks ago I discovered roasted vegetables. Ive been reading from other's blogs how good they are. Once I made them I couldnt get enougph. Now Im not going back to steamed vegetables unless a recipies calls for them.

A good friend and I went to the beach earlier this week for some girl time and some R&R. We stoped at a half price book store that was near by to see if there was any Vegan Cookbooks. She had picked up a health cookbook a couple days before and that sparked my inital intrest. I found a book that was more than half off and was well worth it. The book is called "The Vegeterian Family Cookbook " by Nava Atlas. It shows you that you can make recipies vegan by adding soy yogurt vs regular yogurt, daiya cheese vs cheese made from milk. Ive made three recipies with this book and loved each one.

Today at a Garage Sale I got a book that talks about Macrobiotics. Ive heard about Macrobiotics and have been curious so finding this book for a $1 made me excited. I have a month till school starts so hopefully this will keep me busy during the days Im not keeping myself busy.

Thanks all for being great!!

My Trip To WVa, Food Poisioning, Pictures

Hi All!

I got back from WVa on Sunday evening and since then my mom, dad and I have been getting back into our normal reutein. Like I said in my last post we went down to WVa for my mom's Homecoming and a family get-together. We all had a great time visiting family and catching up with everyone.

The second night we were there we got a fruit platter to share at a cook-out that our family was having. Less than 24 hours later I was extremely sick and believe that I had gotten food poisioning from the fruit we had bought. Unfourtenetly I wasnt feeling well most of the trip but tried to make the best of everything, especially spending time with my adorable cousins.

I am thankfully feeling better and now able to resume my normal eating pattern but feel bad I missed out on some of the family fun.

Alexis, Aiden, and I

The decendents of our family

Aiden and I

Back to West Virginia!

On Thursday my mom, dad, and I will be traveling back to West Virginia.

My mom is from West Virginia and two of my Aunts and my one Uncle still live down there. We are going down there for my mom's Community Annual Reunion. She grew up with her cousins and other family around her. When we go back its great to see everyone but this reunion gives my mom an opportunity to see everyone who has moved away to different states.

Now West Virgina isn't that Vegetarian or Vegan friendly. So each time I go I have to go shopping and pack me a cooler of food. Now for me that's a little hard to do since I don't exactly plan out my daily food menu. I eat what my body craves and what food we have in the house. I do go off of recipes I want to make during the week when I go shopping but never plan out the day when I am going to make it.

Ive made vegan brownies for the hotel that I know my Aunt from Virginia will love. I have also stocked up on Yves meatless meat and Yves meatless hot dogs. I'm thinking of making cupcakes for the trip and reunion as well since I know my brownies will go fast.

I am really excited to see my youngest cousins who are 4 and 2. I got them some presents that I will be able to play with them.

I will be updating after I come back from the trip. I hope you are all having a great summer and enjoying the beautiful weather. I'm very blessed that I live near one of the fresh water lakes which provides beautiful scenery.

Chronic Pain / Ilnesses and Relationships

Hello Healers,

In my last blog I wanted to address the subject of Chronic Pain / Illnesses and Relationships. Recently I came across a question on the support group I help co-run. The question asked about how each person deals with their partner, family, and friends. I did answer the question on the group but also wanted to answer it here. Dealing with RSD has been trial and error in the relationship department just like it has been in the treatment department. We each have to do what seems right and natural for us, but here is what works for me.

* Significant Other: With any guy I am going on a first date with or seeing I don't mention my RSD. I want my personality to shine through and not the fact that I'm living with a Chronic Pain Condition. I want him to get to know me and if he has any questions I am glad to answer them. If him and I got more serious, I would make sure he understood about my RSD but knows that its not all of me even though it has made me a part of who I am.

* Family: My family has been 110% supportive since Ive been diagnosed. Its been tough to explain to my immediate family about my symptoms and how I am able to manage the symptoms without them thinking that I'm not able to work, be independent, ect. The best way to get your family to understand that you may not need as much help as you once did is to sit down and talk to them. Also easing your way into the activity you want to accomplish will help show your family that you can manage it and may be able to handle a bit more.

* Friends: Its hard for us to understand why our friends tend to "leave" us during a time of crisis in our lives. Others may stay but after awhile they may get frustrated of us never getting better and "leave" also. I have found friends who respect me for who I am and see past the aspect that I have RSD. When I meet them I didn't bring up the aspect that I had RSD. I clearly let them ask any questions they had and still let them.

I hope to do more posts like this. If you have any questions you would like me to address please let me know.

NYC and Relationships

Hello All!

I am back once again. Like I said I had a wonderful and busy trip to the wonderful City of New York. My mom, sister, niece, and I took this trip to participate in the Achilles Hope and Possibility Walk with Team RSDSA. I absolutely love that the Achilles Hope and Possibility Walk was founded. It has brought together people who are able bodied, those who have amputated limbs due to war or other reasons, those in wheelchairs, and those that can walk but barely just make it across the finish line. This walk helps bring awareness of all of the conditions out there that people live with on a daily basis and brings every person who participates either in person or virtually, hope. I love participating in this walk and meet others who have RSD as well. The first time I participated in the walk was in 2007. My RSD just came back the January before and my mom believed that coming to the walk would be good for me to meet others who had RSD. I couldn't get over this overwhelming feeling I had that I felt normal. There were others around me who understood and felt the same pain I did. So when we went back this year I was excited to feel that again and meet others like me. The final numbers according to RSDSA were that 300 people showed up in person and 190 did the virtual walk, this was the biggest walk to date. I did see my good friend Marsha, whom I meet the first time around. We have stayed in contact since and we were both excited to see each other. I was able to finish the full two miles of the RSDSA portion of the walk. The previous time I could only walk the first mile and had to be pushed the second. I had set my goal for accomplishing the two miles so I was excited I was able to do it. I hope and pray Marsha and I will be able to walk the two miles together in the near future.

*Marsha and I at the Walk *

*Jim Broatch and I - He is the director of RSDSA*

* My sister, niece, mom, and I*

For the rest of the day the walk occurred my family and I explored the city. We took a tour bus and went down to Soho where we grabed some lunch. Later that night we took a night tour of the city which I highly recommend. For the night tour we crossed into Brooklyn over the Manhattan Bridge to see the lights of Manhattan at night. Since I ended up pushing myself at the walk I ended up with a severely swollen right foot and leg. So that my body could get a bit of a rest my mom, sister, and niece went on the rest of the tour the next day while Marsha and I met up and did our own tour. We went to Madison Square Garden and then out to lunch. Due to her initial injury she has a hard time on the phone so her and I text for the most part. It was great being able to talk like we never were apart for 3 yrs.

*In Little Italy*

* NYU Medical Center*

*Times Square*

*The WNBA Basketball Court at Madison Square Garden*

Having had a great time in NYC just showed me that I need to do something to help my family and friends understand a bit more about my RSD without scarring them. I feel like people either treat me like I'm 100% healthy or 100% disabled. There are many times when I can walk a long distance but I may not be able to the next day. That is simply the RSD and its hard to predict how I'm going to feel day to day. Its a hard concept to grasp, and would think it would be hard for some people to grasp. I'm going to addressee this topic more as I believe it needs addressed, not just in my life but for all of us who have chronic conditions .

New York City

Hello Wonderful Healers!

I am back from my wonderful trip to the Big Apple. My mom, sister, niece, and I went for four days, Saturday through Tuesday. We primarly went for the Achilles Hope and Possibility Walk but also went to enjoy the sites of New York.

I am going to blog more on my amazing experience more in depth in another blog. Right now I am unpacking and Im recoving from the trip for the next couple days. I do want to share about the Achilles Hope and Possibility Walk experience.

Sending Healing Thoughts To All of You!

Friends, Food, and NYC

Hello Welness Lovers!


Ive have a great couple days with my friends. We decided to go out to dinner on Monday. Since all three of us are Vegan one of the girls found a restraunt that had not only food for those who ate meat but also accomidated Vegeterians and Vegans. We were suprised at the selection of food that was avaliable and how nice the place was. After each one of us kept debating over what we wanted we ordered since everything sounded wonderful, we got caught up with each other's busy lives. I ended up getting the Tamale Platter with Black Bean Chili on top. M got a Greek Salad with tofu crumbles to replace the cheese. K got a sample platter with various items like a spinach pie and hummus with pita bread. We all loved the food are were trying each other's meals. At the end of the meal we each got a Chocolate Milkshake for dessert. The milkshake was made out of Ricemilk and was more than one person could drink.

Tommy's Website: http://www.tommyscoventry.com/index2.php?section=WhatsOnMenu&page=TheMenu&menu=LunchDinner&menusection=Salads

On Saturday morning my mom, sister, and niece will be heading to NYC. I am more than excited not see one of the most magnificent cities but to see friends that Ive made since Ive been diagnosed with RSD. There are many aspects to having RSD that people look at as negative, but the people you meet is one of the positive things to this syndrome. Without the friends Ive made who have RSD and the support they give I probably would have fallen into a depression. My mom and dad as well as friends have helped so much but having someone who can understand means a lot.

My sister will be running the 5 mile course during the Achilles Hope and Possibility Walk. I am really proud of her as she has been training for a couple months now. My mom, niece and I will be walking the 2 mile course for those who have RSD. The last time we were in NYC I walk the first mile and then had to be pushed in a wheelchair the last mile. I am so happy Ive came so far in the last 3 years that I will be able to do this unassisted. It helps remind me that Im fighting this RSD everytime I get out of bed or everytime I walk my dog. I refuse to let this take a hold of my life and participate in things like this to help others who have RSD. Hopefully one day there will be a cure found from the money raised from an event like this!


Achilles Hope and Possibility Website: http://www.nyrr.org/races/2010/r0627x00.asp

RSDSA Achilles Hope and Possibility: http://www.nyrr.org/races/2010/r0627x00.asp

My Firstgiving Page: http://www.firstgiving.com/erikkafightingagainstrsd

** All donations are tax deductable



Healing Thoughts!!

Happy Father's Day

Hello Healers!

Hope you are all doing well and enjoying spending Fathers Day with your Father whether biological, the male role models in our lives who are there for us, and our Father in Heaven (Spiritual Father).

Over the last week I've been spending a great deal of time with God the Father. Ive came to discover how much He loves us. He loves us so much that He gave His only son to die for us. I doubt that human would willingly give up their son or daughter to help save millions of people's souls. Yet we have an amazing God who would and because of that we are free of the sin we are not only born with (because of Adam and Eve) but also have since we have since we have a free will.

My Pastor is helping me study the Bible this summer. I am going to be reading the Torah, the first 5 books of the Old Testament. Understanding the Old Testament helps us understand the prediction and the coming of Christ.

On Friday my mom and I went to visit another college. It was a Transfer Student Open House where we were able to tour the campus, talk about what credit would transfer and the most important financial aid. I really liked the college and have a big decision to make. Ive been praying about it for a long time and believe I have my answer, Ill let you all know soon.

Its pretty warm here today. I'm about to go enjoy some time on our hammock and a nice big salad later on. My dad and I washed his car earlier and spent time outside playing with my dog Holly.

In one week I will be in NYC with my mom, sister, and niece. I'm excited to spend sometime with my good friend who also has RSD. Her and I haven't seen each other in three years but stay in constant contact. We are leaving for NYC on Saturday and will be there till Tuesday. The Achilles Hope for Possibility is on Sunday June 27, one week from today. I am so ready to kick RSD's butt! I have looked up and have a list of vegan restaurants and I'm excited to try them out.

I hope you are all having a great evening and great Father's Day.

Healing Thoughts To All!

Articles on Headaches and How to Deal with Pain

Hello All!

Today I opened my email and found some great articles that I thought that all of you may enjoy.

Managing Headaches Without Pain Medication: http://abcnews.go.com/Health/PainManagement/managing-headaches-pain-medication/story?id=10642271

Skin Color Affects Ability to Emphasize With Pain: http://www.cnn.com/2010/HEALTH/05/27/race.empathy/

Ginger Can Help With Muscle Pain: http://www.dailymail.co.uk/health/article-1280005/A-pinch-ginger-help-reduce-muscle-pain-heavy-exercise.html?ito=feeds-newsxml

Hope You Enjoy!

Healing Thoughts To All :-)

Update :-)

Hello Wellness Lovers!!

Hope your all doing well, soaking up the sun shine and enjoying the beautiful weather we've been having.

I've been enjoying being filled with God's spirit and learning about Him more through His word. I love being able to connect with God more through eating whole natural foods and knowing Im treating my body as best as I can.

I got Kris Carr's Crazy Sexy Cancer Documentary from our local library and spent the humid day re-learning from it. I watched it when if first came out on NBC several years ago but wanted to watch it again and get anything I could from it. It did make me crave some pasta with tomato sauce with broccoli. Don't ask me why I got this craving especially since tomato sauce is very acidic but I can say it was delicious.

I am still taking my daily walks with my dog. Around 6:30-7:00 in the evening she comes and finds me to let me know that its time for our walk. She a little dog but holds her own. When we get back I get her a fresh bowl of water and she takes a long nap. I'm blessed to have her.

Sorry for the long time between updates.
Healing Thoughts To All of You!

Good Food and Good Memories

Hello Wellness Lovers!

This week has been full of Delicious food and the memories that come with it, visiting a friend from school on the way to see my Grandma, and two Graduation Parties to end it all.

On Tuesday my mom and I went down to visit my Grandma. She is currently in a rehab facility since she just got out of the hospital. Once of my friends from school is near to where my Grandma is at. We stoped at her house and visited with her and her mom for a good hour to two hours. She lives in a rural area, more than I do. They have lots of land and many of their neighbors have farm animals. At their house they had chickens, which I loved. I don't want any but loved to watch them walk around. It also confirmed why I am vegan and why I cant eat them and their eggs, it definitely wouldn't seem right now. We then went and visited with my Grandma for a good couple hours. My Aunt (her daughter) told me her son was having a hard time eating dairy and wheat products so I let her know about the dairy alternatives to cheese (daiya) and other things that might help. It just seems more and more people are having a harder time digesting meat and dairy products.

After the visit with my Grandma my mom and I went to Whole Foods to pick some things up that we cant get at stores near us. At the store I started craving a dish that Ive had so many times when I was younger. My friends mom and her mom (friends Grandma) would make this dish and I would eat over there frequently. Recently my friends Grandmother passed away and I too thought of her as my Grandma so this dish reminded me of her. We bought some gluten free noodles for the dish and other goodies. To make the "Goolosh" we added homemade canned tomatoes, the pasta, green bell pepper, a little bit of onion, and black beans. It tasted just like Grandma Judy's and was absolutely wonderful.

Sweet Potato & Beet Chips, Gluten Free Pasta, Earth Balance Butter,

So Delicious Yogurt, and Strawberries...yummy!

"Goolosh" - Pasta with Noodles and Tomato Sauce with Black Beans

Yesterday was the Graduation of the High School I am an Alumni of. It seems so weird Ive already been out for two years already. On that note we had two Graduation parties that we got invited to. At the first party I filled up on some delicious fruit. Here in the north our fruit season isn't until mid June or so. It was nice to be able to have a fruit salad and taste all of those flavors. At the second party one of my friends also happens to be vegan so I was able to eat some of the food that her mom makes for her. I had also brought me some hummus so that I could could have a dip for fresh vegetables. At least I know what to do for the next Graduation Party. I have one more and then one is being thrown at my house for my cousin which will make it even easier.

At one of the Graduation Parties. I have been friends with these

girls for years. The girl I am sitting next to is also vegan.

Sending Healing Thoughts!

Learning New Ways To Re-Think Symptoms

I have been reading a book on these last few weeks on how to not to be controlled by your symptoms. The book is called "Stop Being Your Symptoms and Start Being Yourself" a 6 week Mind - Body Program to Ease Your Chronic Symptoms. The book is by Arthur J. Barsky M.D and Emily C. Deans M.D. I'm going to be honest, its taken me a little while to actually get into the book and still at times do not agree with it. There are several things though that I do agree with and think many of the ideas other people may feel helpful.

The book starts off talking about how since medical technology has advanced more people are living longer. Since people are living longer we are contracting more conditions, syndromes, or diseases that we wouldn't have otherwise including dementia and althestimers. Also because of medical technology many people expect to be cured of their conditions, syndromes, or diseases. When a person's symptoms aren't fully alleviated or the person isn't cured of the condition, syndrome, or disease the person gets disappointed. The person either blames their Dr that they are not doing their job or the Dr blames the patient that they are making up their symptoms.


The book also talks about the difference of symptoms and disease. A symptom can be produced by more things than physical disease; they can be produced by our life experiences, expectations, beliefs, and emotions" (pg 19). This is evident in those who have an optimistic outlook on their treatment. Those who are optimistic outlook do have symptoms but are less apt to focus on them. Also it is also evident in those who expect a cure or total remission of sorts. When I got diagnosed with RSD I knew my life was going to change. I did want remission but knew I had to get through every day and did so with the help of my family and friends. After 8 years I still have that support and realize how blessed I am everyday.


Dr's for the most part are taught to diagnose and treat their patients. When they find nothing wrong there is nothing to treat. This is hard especially with Reflex Sympathetic Dystrophy where nothing shows up on x-rays, CT's, MRI's, or other medical tests. Doctors are left to diagnose the patient by ruling out other conditions and focusing on the symptoms. That is also hard to do since not everyone who has RSD has the same symptoms. Someone may swell like a balloon while person's limbs may turn different colors, while another's may do both.


I will post more about the book when I have read more. I have found it interesting pretty far and so far a good read.




On Saturday my mom and I went to the store to get some fresh vegetables and fruit for the weekend. It was absolutely crazy there. I would go and grab something and almost get ran over. My tension headache from the night before came back full force and I was pretty much down for the rest of the evening. That night my dad had went to cut the watermelon we had bought. We were all so excited since it was the first one that we got this year. It ended up having some kind of worm type holes. My mom ended up taking the watermelon back to the store since it wasn't worth eating. Today we went to my sister's house. We had a Birthday type gathering for my other sister. I brought my vegan burgers and munched on some raw vegetables. There wasn't much I could eat other than corn which I eat with nothing on it (yum!). I had offered to make a cake or cookies (vegan of course) but was shot down by my mom earlier this week. I'm nervous about when I go to NYC what I'm going to eat. I'm going with all meat eaters, and even though I love salads, I do like a bit of variety too.

As I mentioned above Ive been having some trouble with my neck and my tension headaches are back. The only way I know to rid of them is to get my neck massaged and don't have an appointment for a month. If you have any suggestions I will take any at this point.



Healing Thoughts To All of You!

Life Is Good!

Hi All! I hope you are all having a great week and enjoying the lovely weather, I know I am. I have to keep this a little short since my dog is waiting for me to take her on our nightly walk.

I have been having an awesome time eating foods that are nourishing my body, one bite at a time. I actually became a little attached to a veggie sub I started making. My dad had left over hoggie buns from his lunch this week so I grilled one on our stove grill and cut up some fresh vegetables that we had (green pepper, cucumber, celery). I added a bit of spinach and veganise and olala it was soo good! Its perfect for a hot day way no one doesn't want to cook.

Not too much has been going on here. I went to my Pain Management Dr's yesterday to get my SCS reprogrammed. He suggested that I get it reprogramed last time that I saw him. All I had to do was see his nurse practitioner and the Medtronics Representative. The Medtronics Representative checked my battery and let me know the reason that I had to turn my battery up more is because my battery is starting to go. I have a 3-5 year battery and I have had it implanted since December 2007 so it will be 4 years in December. She gave me the signs to look for and my remote will let me know when to call the Dr. I just hope it doesn't happen during the school year. She told me it shouldn't and that I probably have a year left but that is just an estimate.

After the Dr's Appointment my mom and I went to Khols. Since I have lost so much weight in the last year because of becoming vegan I dong have any shorts (besides athletic ones) to wear. I got some really cute shorts and tops which fit me with out me having to go and getting a bigger or smaller size. I had a gift card too so the clothes were needed and were a gift to myself for all of my hard work this year. Also to show off a bit in NYC (we all like to show off, admit it!).

Well I'm off to go on my walk. My dog won't stop crying...lol. I'm reading an interesting book about medical symptoms and would like to share with you some concepts. I will have to next time.

Healing Thoughts!!

* P.S. The Concert on Monday was awesome, I got to see Friends I havent seen in a while. Its always great to get away and enjoy some music for awhile.

An Amazing Weekend! + Pictures

From Friday to Sunday I went to West Virgina to visit my extended family. I haven't been to Wv in about 2 or 3 years so it was great to see my family especially the ones that hardly travel. Due to my RSD I do not like traveling for an extended period of time so it took some will power to get through the 4 hour drive both there and coming back.

During the stay in Wv I finally saw my cousins whom I haven't seen in several years, actually I meet one for the first time. The two of them, are two and four years old are absolutely precious and didn't want to leave my side all weekend.

Alexis and I

Aiden, Alexis, and I

I also got to visit the cemetery where my Grandparents, Uncles are buried. My one Uncle, Uncle Bud I was especially close to before he passed away about 7-8 years ago. I believe I mentioned this but during finals I had a realistic dream that he was there and I ended up waking up crying. I believe with my whole heart that he helped me through finals.

Alexis and Aiden picked "flowers" for me

My mom and I went and bought some flowers today. I wanted a plant for a planter I made the first semester of school but when we got it home it was too large. I ended up getting fresh parsley since I end up using a lot when I marinade tofu or vegetable pizza. I am exited to use it any tips on using it would help.

Tonight I am meeting up with one of my good friends and we are going to a concert that our Church is having. One of our friends that grew up in the Church with us will be opening for the band so we are both excited for this concert.

I hope you enjoy,

Healing Thoughts!

The Obsticals of Chronic Pain

Over the last 8 yrs I have lived with the pain of Reflex Sympathetic Dystrophy. Its hard for me to describe to anyone who doesn't live with this type of pain day in and day out what this does to you physically and mentally. Going to bed with pain and knowing that your going to wake up and experience it all over again can be trying at times. In my case I am a very light sleeper, so I do feel pain when I am sleeping. People may find this to be a hard concept but when you have RSD its reality. Last night esspecially when I would only sleep an hour at a time due to my right arm feeling like it was on fire.

I have never gotten to the point where I have needed help by a Professional for the mental obsticals that RSD has thrown my way. I am not saylng that seeing a Psychiatrist is a bad thing. For many people it helps them express emotions that otherwise they couldn't. I do recommend if you or someone you know has chronic pain to go see a Psychiatrist that has specialized in Pain Managment. I have been able to surround myself with people who support me. I surround myself not only with my family and friends but with others who have RSD. Those of us with RSD can support each other by understanding what each other is going through, encouraging each other through various treatments, and simply be there for one another.

I meet one of my good friends who has RSD on facebook. She and I quickly became friends and a short time later we were able to meet in NYC when I went to participate in the Achilles Hope and Possibility Walk in 2007. Even though her and I are several years apart in age we are have a bond because of the pain we experience each and everyday. I havent seen her since 2007 and I am looking forward to seeing her this summer.

One of my friends from my college, has Cerebral Palsy. Him and I have great talks whenever he comes up to visit as he graduated from the college in 2009. He made a donation to RSDSA on my behalf. He also posted about the walk on his Disaboom site. If you have a chance please check it out. He posts reguarly about Cerebral Palsy. Here is the link to his Disaboom site, click here http://www.disaboomlive.com/Blogs/zachary/archive/2010/05/17/achilles-walk-for-hope-amp-possibility-team-rsdsa.aspx

Before I end this post I do have to let everyone know how strong people with RSD and Chronic pain are. Well actually anyone who has a "disablility" (I hate that word) is strong emotionally and physically. We have to find ways to get things accomidated for us so that we may have an equal chance just as everyone else does.

Vegetables Anyone?

The last few days have been full of healing food, time with my precious dog, and spending time with a good friend.

Ive always loved food and discovering new flavors and creations. I made a great sandwich on Friday which included cucumbers, and tomatoes that were marinated in spinach and herb and parsley herbs along with some olive oil. I grilled the cucumbers and tomatoes and put them on toasted bread with the extra marinade on the bread. It was delicious and I had it again today for lunch.

I made a vegetable pizza tonight for dinner. I love making these especially since they are simple to make. I usually add any fresh vegetables we have in our fridge which included a green bell pepper and onion this time. I added parsley for the pizza taste and added some daiya cheese. I normally don't add daiya cheese but decided to for a change.

Since I came home from college my dog Holly is supper happy that I am home. I have taken her on a few walks if my body and the weather allows. She is always willing to play with her new toy and lets me know quite a few times a day. The following is a picture of Holly and two of her toys. I believe this was taken on Friday after her and I were playing for a good half hour or so. She was out for the count.

Last but not least one of my good friends and I got to spend a good amount of time together yesterday. Her and I hardly see each other do to our schedules. She wont be here over the summer due to working at an amusement park. Her and I went to see a movie and then went out to eat. I ended up getting a Black Bean Burger with Guacamole on top...yum! I don't have any pictures of our outing but we had a great time.

Book Recommendation

I am blessed to be able to live near one of the greatest private teaching hospitals in the country. I'm not saying it is the best but one of the best (also according to U.S News and World Report). I was diagnosed with RSD by an orthopedist at the Cleveland Clinic and refereed to my current Pain Management Dr, whom I still see today.

Dr. Michael Stanton-Hicks has dedicated his life to his patients. He is constantly at conferences helping teach others about RSD and Chronic Pain, in other countries treating those with RSD, or at the Cleveland Clinic spending time with his patients (treating them). He will spend up to 20-30 minutes with each of his patients. He likes to know what is going on with us medically, if anything has changed pain wise, he also likes to know how our life's are going. My last appointment I brought my homework since I knew it would be a long appointment and he started laughing because he thought it was hilarious that my algebra book was so thick and heavy. I hope and pray ill be able to work with him after I graduate from college.


Recently my Dr. wrote a book on Pain Management, The Cleveland Clinic Guide to Pain Management. I am already done with the book and wanted to recommend it to all of you. It is a must read for everyone who has a chronic pain disorder, knows someone who has a chronic pain disorder, or just wants to learn more. Dr. Stanton-Hicks talks about the different types of chronic pain (the different types of pain), how it can be treated with conventional therapies and alternative therapies. He also talks about different syndromes / diseases that can cause chronic pain like RSD, firbromyalga, and cancer. In the back there is also a mock pain diary so you can show your Dr how much pain you feel at different types of the day. Over all its a great book. I know I posted this before but here is my Dr. talking about the book: http://www.youtube.com/watch?v=5QIc4hZlRJQ

My Avacados

Hemp Protein Shake...yum!

All the way to the top of the glass!

Today was my recovery day since my RSD is going a little out of control due to all this rain we are getting. I am trying to eat as many healing foods as I can to keep my body functioning at its best. I made some homemade guacamole today. I had some on a vegan burger and it was delicious. I am currently enjoying a hemp protein smoothie with a banana and strawberries. I use to only drink my shake every other day or so but now my body is craving them.

I hope you enjoyed the pictures!

Healing Thoughts!!