Wednesday, June 3, 2009


When I was diagnosed with Dystonia in the spring of 2008, I struggled with accepting that I would have this disorder for the rest of my life. According to my neurologists, the only options that might help reduce my symptoms were medications and Botox in order to help release the painful, spasming muscles in my neck. From my research, the medicines can cause even more side effects and make you feel like a zombie, and they don't really work effectively for most people. I have had Botox injections on several occasions. But, I'm not particularly fond of having poison injected into my body on a regular basis.

Dystonia has caused me great physical pain; I experience tightened muscles that spasm in my neck and back and pain that shoots down in my arm. So, of course, I began to research alternative methods for treating this disorder. Disappointingly, aside from possible invasive brain surgery called Deep Brain Stimulation, for which not all Dystonia sufferers are even eligible, there are not many other options besides the surgery, Botox, and meds.

While the Botox has helped and I am grateful that this is an option, it has not cured my symptoms. Through research, I did find cases where physical therapy helped some patients who have Dystonia. So, I spent much of last summer going back and forth to physical therapy sessions. Up until the physical therapy, I was not able to turn my head to the left. My neck was locked in a painful, spasming state. So, I do credit Botox and Physical Therapy with helping my condition.

Currently, my neck is more straight or centered. However, I still suffer from painful spasms and pain that cannot necessarily be seen; but I sure feel it. Some days it is still hard to hold my head up due to the spasms and weakness in my neck. So, I continue in my quest for more relief from my symptoms.

I continue to read/research remotely similar conditions. I try to implement things that I feel might help. I remain very prayerful about anything I choose to try. (i.e. supplements, etc.). More importantly, I am in consistent prayer that the Lord will continue to place Favor upon me and lead me to powerful resources. Most importantly, I pray for healing.

I am blessed by the support of several family members and friends. On occasion, I have been asked quite a few questions and have received some interesting comments from family, friends, and/or acquaintances regarding my illness. I will discuss a few of them.

Regarding Denial/Acceptance:

Someone was concerned that I was not accepting my illness, because of the consistent research that I do in terms of searching for ways to make myself healthier.

While my approach may not work for everyone, if I do not continue to search for ways that will help me to feel better and function better, then I feel that my existence would be very bleak and depressing. When I stop looking for other options or ways to improve my health, I will have given up hope. Don't get me wrong, some days I do get a bit down and/or upset, because I may be in pain and I become frustrated because I want my progress to move more quickly. However, I pray for patience at that point.

My doctors told me that my illness (Dystonia) will never go away. I am thankful that we have doctors to help guide us in our journey. However, no doctor has all of the answers. In fact, none of my doctors have shown much interest or knowledge about all of my individual issues or illnesses(i.e. the Endocrinologists knows nothing about Dystonia; the Integrative doctor doesn't mention anything about Autoimmune Disease). In my personal experiences with many doctors, they solely focus on "medicating" or "treating" me for the issue that they are specifically trained to deal with versus trying to figure out ways to help me become healthier so that my body will develop a more strengthened immune system.

I understand that a doctor can only treat you based on their area of specialization or expertise. However, it would be nice if a doctor even attempted to try and make some connections. Heck, if I were a doctor, which I'm not, I'd be hypothesizing ,"It's possible that a contributing factor of your developing Dysonia is..." When I pose these types of questions and/or research to the doctors, some of them get offended, some of them listen but don't really give it a second thought, some simply don't have enough interest to care, and some simply are not knowledgeable enough about various aspects of health to think outside of the box. I know that doctors are up under various guidelines by the AMA, but I'm sure that they could do more than to simply recite technical jargon that comes from a textbook. It's ridiculous!

For example, I have Graves' Disease which is an autoimmune disease. Not one of my endocrinologists have ever mentioned the importance of a healthy, anti inflammatory diet. I was never even told that I was at risk for osteoporosis; I had to find that out the hard way. Research has proven that the anti inflammatory type diets have helped many patients with Autoimmune diseases to improve their symptoms. I only wish that I would have known the importance of this type of diet and the importance of taking antioxidants earlier. But, better late than never. Yet, my endocrinologists simply read my results from the blood tests and determine whether or not the dosage of my medication is correct--nothing more, nothing less.

The body works synergistically. So, wouldn't it make sense to treat the nature of illness in that manner as well? I have consulted with an Integrative Doctor through a reputable hospital. However, while I am blessed to have located this doctor for guidance, this doctor does not make any attempt to connect the Graves' Disease and the Dystonia and the Leaky Gut Syndrome, or any other issues. I would venture to say that all of my illnesses are connected in some way.

It would be very beneficial if it was the normal practice of all physicians to take the time to develop hypotheses and theories for cases/conditions that aren't so straightforward. After all, fundamentally, aren't those the principles that science is based on? But, it's more like wham, bam, thank you ma'am and you're rushed out of the office. We also must give our insurance companies credit for putting a cap on the time that we are "allowed" to spend with our doctors.

Unfortunately, in this day and age, one doctor or medical professional may not be the only answer when you are suffering from chronic, degenerative illnesses. But, a combination of approaches might be necessary to see improvements and hopefully eventual healing.

Hopefully, in the future, more doctors will be trained to take a "whole body" approach when it comes to the practicing of medicine. Doctors need to understand that one out of whack system can affect another system. This type of training would have to be undertaken very carefully and not all doctors would be able to handle it. But, I believe their are some medical professionals who may be brilliant enough to handle this type of challenge.

The "dream" doctor would need to have the following qualities: they must be highly intelligent, the doctor must be able to think critically, the doctor would need to have an insatiable curiosity about their patients' unique issues (because we know that not all patients are created equal; what works for one may not work for all), they would need to be motivated to keep up with ongoing research, and an extreme amount of compassion would be nice. And finally, the doctor should be able to think outside of the box. I would love to be in the care of a doctor like that (which insurance would cover)!

I am fully aware that illness and death are a part of life. Some will get better and some will not. However, God gives us free will. And, it is my philosophy that I must do what I can to help myself. So, I pray that the Lord will continue to give me strength to remain open to positive possibilities.

Be Careful about what you read, ingest, etc.

I have been given this advice on several occasions. This is good advice. As mentioned in prior posts, I take a variety of supplements, I am on a restricted diet, and I have tried some alternative treatments such as acupuncture. Some things seem to help and some don't.

To anyone trying alternative treatments, I would advise you to be careful. To anyone trying "traditional treatment" through a doctor, I advise you to be careful, too; I have had a host of problems associated with supposedly "good" doctors who don't seem to know much about the medicines they are prescribing or conditions that they are supposed to be treating. A part of a doctor's oath is "Do No Harm." Unfortunately, unintentional harm (due to neglect, dismissal of patients' concerns, unwillingness to do research in an effort to help, etc.) happens everyday--I can attest to that.

I have read that it takes 10-12 years for the powers-that-be in traditional medicine to buy into certain treatment protocols and illnesses. I believe this is why illnesses such as Leaky Gut Syndrome are not more widely understood or treated. I believe that once, hopefully in the near future, this type of illness is correctly treated and understood, there might be less suffering in the way of degenerative illnesses such as cancer and Autoimmune illnesses.

I guess that I've become somewhat of an experimenter in the sense that I am willing to try nontraditional approaches(i.e. vitamins, acupuncture, yoga etc.) in an attempt to help some of my medical issues/symptoms. I pray on everything before I choose to embark on it, and I pray while I'm "in the midst of it all." I feel that the Lord has blessed me with a certain amount of intelligence that allows me to read and understand the articles and books that I have encountered. Now, if it's something that looks too technical and hard to understand, I know to leave it alone-LOL.

While I do get weary and very frustrated, I try to remain faithful. Everyone will not understand why I do what I do or why I think the way that I do. That can be frustrating. But, in the end, I don't understand everybody either. So, this is okay and completely understandable.

Some might believe that I should release everything unto the Lord; I agree. I do believe that I have no control over my situation, and the Lord will determine my plight. However, we have all been given Free Will. I choose to use my Free Will to try and figure out some ways to make my life more physically comfortable. I simply pray for His guidance. I don't think the Lord would have a problem with that. As long as I'm not constantly complaining or have a woe-is-me attitude, I think He is okay with me.

God Bless and thanks for reading my Blog


Keke said...

I relate to your comments above. I too have dystonia, and I too research everyday. I do not and will not accept Dystonia as a life sentence! I remember prior to being diagnosed, a chiropractor whom I had just started seeing because I thought I just had a "stiff neck", told me at that point, with my neck twisting off my shoulders that I would just have to "accept" that this is just where I was. I was so FURIOUS! Easy for her to say, as she's looking straight at me and I was looking at a wall! But, then again, I was only a couple of weeks into the onset of this disorder and had already started researching...
I said to her, "what if I have Dystonia?" She said, "Oh no, don't start having crazy thoughts and stay off the internet, YOU DON'T HAVE CANCER" I thought "Cancer" who said anything about that? It was at that point that I realized I was in the wrong place and fired her. In fact, I have fired 12 doctors for various states of ignorance within the last 6 months. In March of this year, I was finally diagnosed properly with Dystonia, In April I received my Botox injections and after six months of Hell and only one treatment I am dramatically improved! I have the most awesome nuerologist in the world. I don't know if you are east coast or west coast, but she would listen to and take into consideration all of your other challenges. And she is a researcher, a compassionate wise doctor and woman.

ChyvonneB said...

Response to KeKe,

Thanks for the response! I hope you are having more "better" days with the Botox. This is a very tricky disorder, changing from one day to the next.

I live in the Midwest. If you get a chance, please send me a comment with the names of your neurologists, regardless of location. I'd like to keep them in my repitoire...just in case. And, perhaps those names may help someone who happens to read this Blog.

Take care and I pray for your continued improvement/recovery!