Sunday, July 24, 2011

Struggle between your logic and emotions

Often what people don't realize about having Stargardt's is on any given day, we may look just as normal as the next person. But if it's one thing life has taught us, appearance can be deceiving.

No matter how normal a Stargardt's patient may look, they are faced with challenges everytime they step outside of their regular routine. There are always new difficulties that needs to be overcome even in life's simplest activities. Wherever you go, there is a constant reminder of the inconveniences of not being able to see.

Whehter is catching a bus, buying groceries, travelling, schooling and learning, everything is related to being able to see. If you're a parent or relative of a Stargardt's patient, then remember not to take anything for granted, because no matter how simple an activity may be to you, often the inability to see my prohibit the Stargardt's patient from accomplishing that task.

It's a challenge to overcome the physical inconveniences, but the real demon is often within. The ability to process ignorance and prejudice becomes crucial to those who has any type of disability. Facing constanto challenges, I often felt a sense of helplessness due to my inability in changing my condition. There will always be good and bad days, some days when I am more emotional, I still feel a ense of sadness, but on other days, my logic tells me I am a very lucky person. One thing is for certain, it will take a very long time before these emotions are trully digested. Most people never come to terms with their life.

It's a tiresome struggle, and perhaps one that will never trully go away. And there's nothing anyone else can do to help except to be supportive. As a parent, friend of relative, be supportive and understanding, even if you may not understand. Give them the benefit of the doubt and have faith in their ability to overcome any challenge.

Support them and they will find their way in due time.

Sunday, July 17, 2011

Accupuncture for Stargardt's?

Since last September, I've been in Asia receiving accunpuncture treatments. Although there has been some setbacks inbetween, I've had close to half a year's worth of weekly treatments.

Why Accupuncture? I have a friend with some eye condition who has indicated this particular doctor specializes in accupuncture for eyes, often helping to stimulate nerves and has had some results in lowering perscription. Although the thought of having needles in my head and around my eyes is difficult to digest, but I figured it might be the only way to help reduce my growing perscription.

The Treament Process. Weekly sessions with each session totalling about 14 needles in both the top of the head and around the eyes. Accupuncture is based on Chinese Medicine's philosophy of stimulating specific spots which is related to a certain body part. The idea is to increase blood flow to that area and allow the body to recover or rejuvanate itself.

My Thoughts. The accupuncture sessions has been trully energy consuming both in body and spirit. The physical pain of having needles in your head is tolerable but still fairly evident. Especially when it comes down to the four needles cloest to your eyes. It feels like the needles were placed deep within the muscles around the eyes and at time s I was afraid if I move my eyes too much it might go into the eye (I think that was more fear than reality) After the needles were inserted, you wait about half hour before taking them out. The physical pain comes from the skin because the skin on your face tends to be more soft and sensitive. In addition, the tiniest movement in your muscles sends sharp pain in the muscle. On days where i have sniffles and allergies, the throbbing pain becomes even more evident. (felt as if i was having trouble getting oxygen to my head) After each session, there is always an unexplanable tiredness that follows, rest and drinking lots of water is recommended.

The mental state of mind was evne more overwhelming than the physical pain of these accupuncture sessions. The hope of improved vision, the sight of other young children being brought by their parents. The unfairness of this world and the desperation of having Stargardt's Disease. Being in that bed is a constant reminder of my condition.

My Results. The only thing I really felt was after each session, my eyes seems to be clearer when looking farther, things seem brighter. But my perscription still remain the same.

I don't relaly know what to think. At this moment I've decided to halt the treatments because I feel it is not worth the pain. Although the real struggle comes when there's is a undying thought that tells you "perhaps you didn't try hard enough or long enough to see a difference" There are some patients there who has received treaments for years, yet I'm not sure what the real results are. But what I've concluded is, if I can't believe that it's going to make a difference, then it would be even harder for the treatments to have real impact.

The pain that accupuncture brings is more than just a physical nature. It brings out hte darkest side of the disease and no matter how much I tell myself, I still feel a mix of anger and sadness.

Maybe one day there might be a cure. But until then I see accupuncture as a way to relieve tension but not as a solution to eye conditions.