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.

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

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.

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!

Refreshed

This past weekend was a great time to help me get refreshed for the upcoming week. As I mentioned before I have several tests before finals and I needed an environment to study and need to get some healing food. One of the things that helped me loose the tension this weekend was to cook.

I absolutely love putting different ingredients together and knowing something scrumptious is going to come of it. Also since becoming vegan I have become more receptive to trying new food and love to discover new flavors. On Saturday my dad and I went to the store and bought some stuff that we just generally needed. I of course brought stuff that I could bring back to school and would help me get through finals. Things like celery, strawberries, apples, ect. that are convenient yet nutritious. I also bought some vegan veggie burgers which I had one of that night. My dad made burgers on the grill and I had my own vegan version. I was happy though that he went for the vegetarian backed beans when I suggested it and he even ate them. I say this because anyone who knows him knows he is extremely picky.

I had two tests today, I started the day off with a almond milk, banana, apple and hemp protein smoothie. I defenitly see a differnce in how I feel, compared to last semester at this same time. I am still tired and hurting RSD wise ect., but I have more energy too and my stamina is up. I am always excited to discover new foods that I can eat and their "powers".

Here are two pictures of the meals I made over the weekend.

Tofu Scramble

Made Sunday Morning

Rice, Beans, and Almonds

Made on Sunday

brought the rest back to school

Sorry the pictures are dark, I took them with my phone.

Until next time!

Sending Healing Thoughts to all!

Self Esteem

The average women (or man) struggles with self-confidence thanks to their peers and not to mention some of their elders. When you throw a chronic condition into the mix it makes the situation a whole lot messier.

As has been stated in my Nursing Anatomy Class; when your treating the body of the patient your dealing with what is also going on mentally. As anyone with RSD or any chronic condition will admit, the procedures are not too glamorous. The side effects of the medicine cause us to gain weight or lose too much weight. This affects us mentally and the fact that our peers are "healthy" affects us too.

Throughout my journey with RSD Ive always believed that I need to be stronger than the RSD. Thanks to me getting educated in nutrition I feel a renewed confidence that I am stronger than this syndrome I have. I am in pain but I know that I can get up each morning and fight with the medicines I take, foods I eat, and how active my body stays. Many people believe that they are being punished, but I honestly believe that I was given this for a reason - to help others who simply need the help.

A Great Day

I have been exceptionally busy the last few weeks with multiple tests. It seems like I have one right after another. Once I get done with one I start studying for the next. Last weekend there were several points that it seemed that I just couldnt study anymore. Thankfully my family came to the rescue with a family dinner earlier yesterday evening celebrating my Mom's and Sister's Birthdays. We went to a Mexican Restraunt which is about halfway for me and for my family. I'm not a big fan of Mexican and getting a meal which could satisfy my diet and wouldn't kill my stomach was hard and pretty much impossible. My other sister had gotten a vegetable fajita dish that I should have gotten and she let me have some of it.

Much to my mom's and sister's surprise my brother and his wife had asked the staff bring in the cake that was bought for them. The staff sang to them in Spanish, it was so much fun. I broke my no eggs, no milk just for a little piece of cake and I didnt eat the frosting or artificial coloring.

The warm weather has been teasing us here. It is currently Thunder Storming out. Im looking forward till the day that the nice weather is here to stay for awhile at least.



Sending Healing Thoughts!

My Everyday Life

This first week back has been busier that I have expected. It seems that my body is able to endure more than I believe it is capable of. I already miss spring break and the comforts of being able to access whole plant foods at every meal. I do believe the way I am eating is helping my body keep up with what I am needing to do.

I have been blessed with Professors who care about me and want to see me succeed as a nurse. They are especially tough though which helps demonstrate how much they want us (the students) to succeed. They want to make sure that when we are certified that they wouldn't mind us being their nurse. This semester particularly I have been using my Nursing skills, thanks to A&P. I have been able to think more like a nurse and Im so excited about that.

I am looking forward to this weekend when I can get a little more rest than I have this week. Being a nursing major isn't easy especially when RSD is thrown into the mix. Oddly I am enjoying the experience.

Keeping Busy

The past couple days I have kept busy but not like I am when I am at school. I finished the remaining homework I had this morning which will let me spend more time with my mom and aunt. My mom and I may even go on a little road trip on Thursday to see my cousins near the Ohio - Michigan border. This is about a four hour drive and we would be coming back on Friday. My RSD of course isn't going to be too happy but it will be nice to see them since I haven't seen these cousins in a good while.

Like I said I would I made the Vegan Banana Bread today. It looks absolutely amazing. When I put the ingredients together it started smelling so good. It also smelled amazing when it was baking. I am looking forward to eating the first slice once it is cool. I am looking for recipes for the left over tofu I have so if you have any suggestions (especially desserts) please share.

Putting the Ingredients Together

The Finished Banana Bread

It is Still Here

It is the third day and I am still stuck with my migraine like headache. In the Semester of Spring of 2009 I was hit hard with a headache exactly like this one that lasted a good 6 weeks. Even after a trip to the ER with an IV of 3 different Migraine medicines nothing helped to relieve the pain. I went to see a neurologist and even had an appointment with my Pain Management Dr scheduled around then. When I saw my Pain Management Dr he had concluded that it was due to a virus that had went into my brain from a chest cold that I have had 2 - 3 weeks prior. It thankfully went away two weeks after I came back to school. The total duration of the headache was around 6 weeks.

I am scheduled to go to my Primary Doctor this afternoon. Unfortunately I have to miss my evening class for this appointment. I am overwhelmed and exhausted from this headache and cant imagine it going on 6 weeks at this point. I will post more details when I get them.

Good Friends

It is always hard to find a good friend. A friend who will stick by you when you need them the most. For each of us we have at least one or two people we can turn to when we need to talk or vent.

For me friendship is a precious thing. Many people can say that they are friends but don't really let the other person in emotionally. It is simply hard to do that and if one of the people betray that trust than a part of the friendship is essentially gone.

This is an important topic for me because I believe I have many friends, but only a few good ones. Unfortunately when you have a disability or illness no one wants to be friends with the person who is in pain all the time, takes medicine, etc.

Stress and How it Relates to Life

Stress can be very potent in someone's life. A little bit of stress here and there can build up to be a lot of stress for some people. Especially if the person already has a chronic condition the stress can worsen their condition.

For me I tend to get very stressed out. I like knowing I have some kind of control over the situation that I am in. I believe that once I got RSD I realized that I didn't have control over the pain I was feeling, the RSD did. Since than I have been trying to be in control and get control over the pain by taking medication and getting a SCS. Still I am in the habit of wanting things to go a certain way and if they don't, getting very stressed out over it. This has caused extra pain and now issues with my digestive system. I have noticed lately that my stomach hurts more when my body is stressed from lack of sleep or from being stressed out. This is simply because the digestive system shuts down during times of stress. I have also been avoiding certain foods that cause me to get overly sick.

I am hoping that I will be able to control the amount of stress that my body is able to take. So far one week into the semester so good.