Thursday, July 30, 2009

Attention: National Invisible Chronic Illness Awareness Week

National Invisible Chronic Illness Awareness Week is September 14-20, 2009.

Thanks "Novelty Patient", a blogger whom I follow, for the info.

Please show your support and share this date with others.

Please visit the site at:

I found the following lists on the above site especially humorous and right on time:

20 Things to Say to a Person Who is Ill


20 Things Not to Say to a Person Who is Ill

These lists let me know that I'm not being ultra sensitive on some of the stuff that has been a thorn in my side lately. We have to stick together. Posting "real" stuff let's us know that we who have Chronic Illnesses are not alone. We laugh and we cry just like everybody else. And, that's okay!

The Emotional Ups and Downs

For those who have been following my blog, you might sense that I have been kind of frustrated lately. Ma, you don't need to read this post (LOL), because you have listened to me vent. I'm sorry if I have stressed you with my emotions going up and down lately. But, thanks for listening anyway!

I'm not trying to make this blog negative. It is a blog to help people who are going through similar. If you are going through similar, then you probably encounter some of the emotional ups and downs. If you don't, that's great. But, this blog also helps me get my STUFF out. So, I can't apologize for that. Thanks to those who support!

As most of you know, being physically sick can also take an emotional toll. Trust me, I am thankful and grateful for what the Lord has given me. While I pray for healing and wish things would be better, I do know I'm blessed.

However, I have ALLOWED a close relative to get the best of me. I love this relative very much. But, some of the sarcastic, underlying comments they have been making have been surprising and very hurtful. I want to say,"Yes I know it could be worse. Yes, I know that such and such just passed away, but I'm alive. The Lord knows I'm thankful..."

I'm so trying to be repectful, because this person deserves my respect. (Anybody who knows me and is reading this, please do not ask me the "who" question--thank you very much).

But, it's like this relative shows concern for my situation but then turns around and makes an underlying comment that makes me feel like they feel that I'm complaining or ungrateful when all I've ever been is sympathetic and caring towards them and their issues. I just don't get where it's coming from. I have a few other relatives/friends who don't get it. But, it hurts more when the person is "close."

Trust me, I don't go around complaining about my pain constantly. But, if someone asks how I'm doing I am more honest about it than in the past. If I'm in pain, I do say so. I'm not looking for sympathy. I just feel it's best to be honest.

Another reason why I feel honesty is best is because I've done the "I'm feeling okay thing" when I'm really not feeling okay. Then, you get responses the next time you're not feeling so well like, "I THOUGHT you were feeling better."

That's when I want to say, "Hold up, I have an illness that causes pain on a daily basis--some days worse than others." But, I shouldn't have to explain that. What I'm finding is that some people want you to say you're good just to make themselves feel better. To me, that's selfish and irrational.

As I know, I have to develop a stronger armour. I cannot keep going around letting others who make unfounded, ridiculous comments bother me. If anything, this will definitely make me a stronger person. But, on the flip side, I am finding that I am becoming more antisocial so that I don't have to deal with...I don't want to be like that. I must find a balance.

I will continue to pray on it as usual. I know life is too short to get agitated by people. I am so thankful for those I can depend upon. I am also thankful for those I love who don't quite get it. I must try to maintain my patience and try to lead by example on how to be a sensitive individual. The Lord did bless me with that virtue and I am thankful for it.


"Peace I leave with you...
Do not let your hearts be troubled,
neither let them be afraid."

John 14:27

Tuesday, July 28, 2009

The Librarian

I was at the library today. I was waiting for assistance from the librarian. I saw these teenagers who were laughing and moving their heads funnily. So, at first I wondered if they were laughing at me since my head does move involuntarily due to the Dystonic spasms and I do shake sometimes.

The degree to which my symptoms appear depend on the day--some days it's quite a bit and many days it's hardly noticeable to anyone but me. Some might call my thinking they were laughing at me being paranoid. I just call it being real, because I do look 'different' when my neck is spasming or I'm having other issues related to my illnesses.

Then, I realized they were laughing at the librarian who was helping them. This lady was sitting at the computer. She has a noticeable tremor where her head and other body parts shake, but it's especially her head and neck. I noticed it before and thought that it could be a tremor or an early stage of Parkinson's--hopefully not.

Anyway, I said to myself, "Kids can be so cruel." Then again adults can be cruel too. I've encountered both. We can talk about sensitivity until we are blue in the face. After a certain point, you either have it or you don't.

I wondered if the lady who was being mocked realized she was being mocked? I wondered if she internalizes the cruelty of others? I wondered if she had developed a strong armour to resist the affects of the ignorant? I hope she has a strong armour especially since she works in a public setting. I'm in the process of developing a stronger armour.

I've talked to this lady several times. She seems very pleasant and nice. I'm glad that she's pleasant. She hasn't let herself become bitter due to her illness or issues. She was probably a pleasant person before she developed these issues. And, that person is who I see.

Sunday, July 26, 2009

Interesting in the News: An Article About Leaky Gut Syndrome

Recently, Scientific American published an article about Leaky Gut Syndrome or intestinal permeability, a condition that I have been diagnosed with. The article discusses how LGS is commonly seen in people who suffer with Autoimmune Disorders as well as in people who suffer from other disorders including allergies and asthma . Hopefully, this article will bring much needed attention to Leaky Gut Syndrome.

You can view information about this article at:

Update: Addition to "Links I Like"

Please visit Links I Like to visit a comprehensive site that discusses Complimentary and Alternative medicine.

The Complimentary and Alternative Medicine site can also be located at

Update: New Post to "Spotlight on Autoimmune Disease"

Please visit Spotlight on Autoimmune Disease located under "Labels" to view links and information about Celiac Disease, an Autoimmune Disease that affects the digestive system. To get to this post, you can also click on the above title.

New Feature: Stories of Others

Since I'm on the internet quite often, I find stories from people who have encountered some difficult circumstances. In fact, my email is set to alert me to certain topics as they appear on the internet. How cool is that little gadget!

This particular post will feature stories from people who have disorders such as Autoimmune disorders and Dystonia. I will also include stories of people who may have other struggles that they are dealing with.

These stories are not meant to sadden. They are meant to bring awareness and to offer inspiration and hope. I believe that it is good to share stories. You never know who might be going through something similar...And you never know who you might help by sharing your journey.

So, please check back periodically to view new stories that have been brought to my attention.
**Please note that these stories will not be altered in any way (i.e. grammatically, content, etc.). They will appear as they were written by the author.

The story of a beauty queen stricken with Dystonia:

The story of a person with Grave's Disease:
Lupus not slowing Gilbert ASU freshman

Friday, July 24, 2009

This morning I viewed a post on My World According to Lupus (You can connect to this blog; it appears on the right of my blog under "Blogs." Lupus Girl discusses how stress can help to trigger sympoms in people who have chronic illnesses. She also mentions some other very important things in relation to chronic illness.

Anyway, I have been feeling a bit frustrated lately. Sometimes, I feel very misunderstood. Perhaps, I do expect too much of people sometimes. My sister once told me that. And, when your expectations are not met, sometimes that does hurt. It might not be right...But, that is how I feel.

After reading the above blog this morning, it was ironic that the writer hit on many of the things I am feeling right now. So, I ended up venting on Lupus Girl's blog. Thanks Lupus Girl for allowing me to vent. I needed it. God Bless!

Here is what I wrote:
OMG--Alot of what you are talking about, I plan to discuss soon on my blog because I am feeling some of these things like right now.

I know the power of stress and it isn't good when you have chronic health issues. But, currently I am not under too much stress...some, but not too much.

What hit me most is your mention of how others don't get it. I often experience this, because my sometimes "invisible illness" is quite painful even when others can't see my symptoms.
I really need to work on myself in that respect and know that I can't necessarily expect others to understand all of the time (even though I would).

I must remember that no one is perfect. Although I know I have other faults, I happen to be empathetic and not everyone is empathetic to the same degree. I have to accept that and not let it bother me. I am working on it.

And the part about the doctors saying well "that" couldn't be a trigger. Yes, I want to scream, "Certain foods, stress, medications, certain activities, etc. can be a trigger--Duh!" I am so sick of doctors making statements that they cannot fully back up. I'd rather they just said nothing instead of making incorrect blanket statements.

With all of that being said, "Lord, I am grateful for the support I do get. I do have many supportive people in my life." I just needed to get out my frustrations--that's all.

Tuesday, July 21, 2009

Publicity for Dystonia

Let's Be Heard!

The following was posted by a member of WEGO Health, a health advocacy site that I have joined. For those suffering with Dystonia AND for those who receive Botox injections for the Dystonia, please get on the bandwagon and make a call. More publicity about this disorder will potentially mean more services and awareness by others.

"I just called and spoke with a representative from and I mentioned that I heard about a new spokesperson for Allergan and wondered why they don't talk about Dystonia since there are about 300,000 in North America alone with some form of Dystonia. David the rep said he agrees that Dystonia should also be added to the campaign. He wants me to call the Marketing Dept. at 800-347-4500. He said if a bunch of us call asking this question, we would have a good shot towards marketing for Dystonia. Please let me know your thoughts before I call the marketing dept. Is this worth a shot?"
(The above was a comment made on WEGO Health)

I called today and left a message for someone in the Marketing Department. Even if you do not get Botox injections, it would be good to call anyway. If this product can potentially offer publicity for our disorder, then we need to call. "There is power in numbers!"

► Reply to This

Articles About Vitamin D Deficiency: Who Knows What to Believe?

I have been told that I am Vitamin D Deficient. So, I have been prescribed Vitamin D supplementation. Lately, I've been seeing articles stating that Vitamin D supplementation might be a problem for people with Autoimmune Disease.

The first article discusses the dangers of Vitamin D Deficiency. The second article discusses potential problems for people with Autoimmune Disease who take Vitamin D. I have no idea whether to continue taking Vitamin D or not. My levels are now within the normal range with supplementation. I guess, I'll just continue to take Vitamin D in moderation...

Article: Harmful Vitamin D Deficiency Common Around the Word

Article: Vitamin D May Exacerbate Autoimmune Disease

Friday, July 17, 2009

Update: Wal-Mart Fiasco

This week, I mailed my letter to the CEO of Wal-Mart, Mike Duke. I also mailed a copy of the letter to the store manager of the Wal-Mart in which the unfortunate incident took place.

I feel that I am speaking up for myself as well as for others who have "invisible" illnesses and/or overt disabilities.

I made it clear that the Wal-Mart greeter has no right to judge whether or not someone needs to use a scooter. I also made it clear that Wal-Mart should discuss this type of situation during their "sensitivity" training.

I further explained that employees of Wal-Mart (and employees of other public places for that matter) must be careful in how they treat customers with disabilties, because there are potential legal ramifications for discrimination/harassmant.

Hopefully, I will receive a nice apology letter. At the very least, hopefully someone in H.R. will be responsible for paying closer attention to matters of sensitivity.

Follow-up Appointment with my Allergist

In May, I had a follow-up appointment with my allergist. In February of this year, I decided to have a food allergy test and a scratch test done to determine any allergies. I felt this might be necessary based on reading articles/books that pointed me in the direction that food allergies could contribute to Autoimmune Disorders as well as other conditions/illnesses.

The scratch test revealed that I had allergies to items such as Dust Mites and grass. That was no big surprise. The food allergy test revealed a sensitivity to 14 foods. I wasn't that surprised, because I figured that I had Leaky Gut Syndrome, and food sensitivities are quite common in people with LGS.

So, I was told to stop eating those foods (i.e. dairy, Salmon, corn, etc.) for six months. When I went for my follow-up appointment in May, the doctor was nice enough to go ahead and retest me for food sensitivities instead of having me wait to be retested in September. I was happy, because I have been very hungry due to my limited diet.

The results showed that my IGE levels went down on all foods. So, he told me to gradually introduce dairy and corn into my diet. Then, he said that we would focus on introducing the other items when I visit his office in September.

My allergists said that he would actually have me do a challenge test in the office for items such as nuts, because they can be potentially dangerous for people who have allergies/sensitivities. I appreciate his caution.

I also asked the doctor to do a test that would test me for Celiac Disease and Gluten Sensitivity. Luckily, the test came back negative. But, I have read that a negative test does not necessarily mean that you do not have a sensitivity to Gluten.

The doctor also clarified a few things for me. The test that was given to me was an IGE test. The results are based on a numerical range. The results of my test showed that most of my levels were at a 2. For Dairy and mushrooms, my IGE levels were a 3.

My doctor told me that a level of 2 or higher is reason for concern. I asked him what could have happened if I had not come in to get this test? He said that if my increasing numbers had reached a 6, I could have been at risk for Anaphylactic Shock. I had read/heard stories about Anaphylactic Shock--a severe reaction-- in people who were allergic to peanuts but ingested peanuts.

I am blessed that I was lead to have an allergy test. I simply wanted the food allergy test because of my intestinal issues and the belief that food sensitivities/allergies can make you sicker. I did not realize that I was at risk for potentially developing a severe, life-threatening reaction to certain foods. I truly learn something new everyday.

My doctor also informed me that if I develop food sensitivities again, I may have to go through the elimination of foods once more. He said that patients with my issue (food sensitivities) usually have to undergo this type of diet restriction no more than twice. Hopefully, I won't have to go through that again!

In my upcoming "What Have I Been Doing Lately?" posts, I will discuss my follow-up appointments with my Integrative Doctor and Gastroenterologist.

What Have I Been Doing Lately: A New Section in My Blog

I am starting a "What Have I Been Doing Lately?" section. I am not done writing the "My Story" section. I did not realize how long "My Story" would take. I will keep writing, but sometimes I take a break.

"What Have I Been Doing Lately?" will focus on more up-to- date information about my health related issues. For example, if I go to the doctor, I may write about that visit.

Please keep reading "My Story" and the other posts. To keep up with my posts, it may be best to follow the "Labels" section which is to the right of this blog.

Once again, thanks for reading this blog. It is therapeutic for me to write, and I hope I'm helping someone in the process! Your comments also mean a lot. They let me know that others are reading this blog...and that keeps me motivated to keep on writing.

God Bless!

Sunday, July 5, 2009

Spotlight on Autoimmune Disease

Spotlight on Autoimmune Diseases

In this post, I will continuously list websites/sources that explain and shed light on various Autoimmune Diseases. With all Autoimmune Diseases, the body "attacks itself." Another common feature of Autoimmune Disease is inflammation in the body. While all Autoimmune Diseases have many common symptoms, each individual Autoimmune Disease has its own unique set of symptoms and related issues.

Vitilago-An Autoimmune Disease that causes the complete loss of brown pigment in the skin.

Celiac Disease- Celiac Disease is a digestive disorder that affects people when they ingest gluten (wheat, rye, barley, etc.).

Thursday, July 2, 2009

Video of Note: CrazySexyCancer

I just watched CrazySexyCancer, a documentary style film by Kris Carr. I had become familiar with Kris Carr when she appeared on The Oprah Winfrey Show a few years ago. Oprah Winfrey has had such inspirational shows over the past few years. I really appreciate her bringing awareness to many issues and resources. Go Oprah!

The cover of the DVD states, "Diagnosed with a rare, incurable cancer, 31 year-old actress/photographer Kris Carr exits her career and dives head-first into an epic journey, becoming a 'full-time healing junkie.' What follows is a four year adventure of mind, body and heart as Kris explores a colorful variety of treatments, both east and west. Along the way she meets four other survivors, her posse of soul-sisters, who refuse to be defined by the big "C." Hip and humorous, intimate and empowering, this cutting-edge documentary shatters old stigmas with a force of spirit, redefining what it means to truly live-not just for those struggling with cancer, but for anyone who needs a personal revolution."

While I'm thankfully not battling the big "C" like Carr, I can relate to her story on many levels. In the face of being told that her illness is incurable, Carr is trying many approaches that would be "alternative" in the eyes of traditional medicine. But, what choice does she have? Either fight or give up. I'm with her--you're better off fighting.

Carr's story is very inspirational. Carr is a cute, little blonde who still has a zest for life. I am truly encouraged by her determination and discipline. She let's the viewers know that her struggle hasn't been easy...But I don't see her giving up anytime soon.

I hope Carr will continue to do well. I pray for her health and continued piece of mind.

Below is a link to Carr's website:

View Carr on The Oprah Winfrey Show:

Fiasco at WalMart: "Why Do You Need to Use a Scooter?"

Last summer, I had just been diagnosed with Dystonia (neurological disorder that causes pain/spasms in my neck and back). I was in the beginning of my treatment and frequently in severe pain. So, I did not go out that much. Now, I am in some type of pain daily, but the range is mild to semi-severe. The botox injections I get (supposed to get them every three months), have helped me to function better. Now, I have more better days. So, now I get out a little bit more.

On Tuesday, I was the victim of what I guess I would call "reverse discrimination." I went to WalMart with a friend who has MS. Often, she uses the scooters when she visits stores. That day, my neck and back were on fire (caused by Dystonic spasms). So, my friend encouraged me to use a scooter.

To be quite honest, I am still very self-conscious about my illness. I worry about my head shaking, the stiffness of my neck, etc. Often, when I go out in public, I am already a bit uncomfortable--especially if I'm having a very "symptomatic" day. I'm working on not caring about what others think. Fundamentally, I know that I shouldn't care. But, it's been a struggle. Some people can be very cruel and uncaring.

With all of that being said, although I decided to use the scooter, I knew that I would be a bit self conscious while riding throughout the store. Although I am in pain frequently, my symptoms are not always obvious. I feel the pain/spasms, but my issues can often be "invisible" to the naked eye. Plus, I work hard to look as normal as possible (that can be exhausting--trying to hold your neck straight when it wants to pull to the right).

Once I decided to use the scooter, I made a the comment, "I hope no one says something about my being on the scooter." I did not want to deal with any drama. Perhaps I should have kept my mouth shut. "Why did I have to go and say that?"

My friend gave the perfect answer "It's not any one's business. You need it. So, use it." She was right, I decided. So, she chose one scooter and I chose the other scooter that was available.
My friend got on her scooter and it started with no problems. I was lucky enough to get the scooter that did not work properly. I got on and nothing. So, my friend asked the Walmart Greeter to help us. Like at most WalMart Stores, the greeter was an elderly lady. Once my friend summoned her for help, she came right over. I was sitting on the "dead" scooter.

The greeter's first words were "What's wrong?" Already on defense, I knew what she was referring to...and it wasn't the scooter. My friend assumed that the greeter was referring to the scooter. Nope. Her reply was, "What's wrong with her?"

I should have ignored her, but I responded to her question. I said, "Apparently, I need this scooter because of an issue that I have." So, she fiddled with the scooter to try and get it to work. While trying to get the scooter to work, she made several more inappropriate comments including, "You look too young," "You look like a teenager," "I could get in trouble if you're on the scooter, because people who are crippled need the scooters." She kept on and on.

I got angry. I didn't curse (I was proud of myself) or yell. I probably gave her more respect than she deserved, because she was elderly. But, I told her "You never know what someone is going through." I even told her that I had a neurological disorder that caused bouts of pain. But, she kept making remarks. My friend stopped me from responding to this woman by reminding me that I did not owe her an explanation. After I told the lady how her comments were very inappropriate, she walked away.

Emotionally distressed and embarrassed by what should have been very simple and uneventful, I wanted to speak to a manager. My friend summoned a manager. The manager came over to the scooter area. We explained what had happened with the Walmart Greeter. The manager was very apologetic and kind. She said that anyone could use the scooters without question and that she had been on the scooter several weeks ago, because of a broken leg. She helped us to get the scooter working properly. As we were pulling off in the scooters, I saw the manager approach the greeter. I could tell by the greeter's body language that she was fiercely trying to defend herself. She didn't look too happy . I could tell that the manager had been firm with her. That was a good thing.

Shortly after our departure, the scooter stopped in the front of an aisle. I was still hurt and frustrated and in pain. As we were sitting there, looking for help, my emotions surfaced. The frustration, the embarrassment, and the underlying pain came to a head. I sat there and cried. I couldn't hold it back. Those tears had probably been there all day. The Walmart incident just unleashed the floodgates. My friend was very understanding--she's been there, emotionally.

I decided to notify the manager that the scooter had stopped in aisle (?). She told me that another scooter had been returned by a customer. I thanked her, but I decided to sit in the car. I had had enough for the day. I got in the car and called my Mother. I told her about the WalMart incident--I needed to talk and get it off of my chest. She felt my pain and tears. She wanted to make it right. She asked, "Did you get her name?" Through all of the turmoil, I did not get the greeter's name. Later, once my friend came out of the store, I learned that she had gotten the manager's name and the greeter's name. I guess she had looked at their name tags. "That's pretty good," I thought.

Perhaps, I will write a letter to WalMart. I feel that it's my duty to bring this to the attention of the WalMart headquarters. I'm sure this type of incident happens all of the time and it will continue to happen. Unfortunately, discrimination occurs everyday and in many forms. But, I can tell my story. There needs to be more sensitivity in the world. Just because someone doesn't look ill, it doesn't mean that they are not ill. There are people walking around with cancer, as my Mother reminds me, who look perfectly fine. Just because you look young, it doesn't mean you are "young." Besides, unfortunately, young people get sick too. Illness has no age. So, wheelchairs and scooters aren't reserved for the elderly or the obviously maimed. Others need them too!

What the greeter did not know is that I am 36 years old. While I'm not old, I am certainly not a teenager. In the past, I have gotten into an altercation with someone, because they thought I was a teenager (A few years ago, I was at a swimming pool with my nephews and this nosy lady thought I was a kid and started questioning me, because I wasn't with an "adult." I often say, that even with my physical ailments, the Lord has blessed me with looking young for my age. Even though I've had a few incidents because of the blessing, I do hope that I continue to receive that blessing!

What would I say to the Walmart Greeter? I would tell her that she needs to be more sensitive. I understand that we have a few people who might abuse the system (i.e. park in handicapped parking spots when they are not handicapped). Obviously, this type of behavior makes it bad for those who need these services. However, you CANNOT judge others just by their appearance--that's called discrimination.