A JOYFUL NOISE

When I was in grade school,  I was introduced to a kids "storyteller" and songwriter pseudo-name "Patch the Pirate".  Then growing up into into a teenager, I eventually got into the songs of his real name of Patch, who is named Ron Hamilton.   A lot of his songs have stuck with me for many years from late teens to even now, though I've forgotten many of his songs. My parents enjoy listen to the BBN radio station probably because of the traditional songs they play.  Once in a while they will play songs from Ron Hamilton.  Recently I heard one of his songs that I haven't heard in a very very long time.   It is called How Can I Fear?    I found a copy of this song in one of my sister's songbooks.  As I listened to the song, it really helped me realized that I should try harder to really keep my faith in Christ, though hard it may be. God is with me, no matter what.  In the dark, when I'm alone, when I face the unknown; He's ever...

Since my illness has seem to have taken a huge plunge recently, many people has asked me what I like to do, or how do I spend my days since I can't work.  I've taken up a lot of hobbies.  I've greatly enjoyed things such as scrapbooking, reading books (nonfiction and fiction) as well as crocheting.  I've crocheted a bunch of scarves (and sold them) wchich has been fun and a good way to make extra money.   I read a lot and at times, yes, watch movies and old TV shows here or there.  I try to help around the house when I can and as much as I can    But what I enjoy most is singing, and listening to music.   I sometimes listen to music and sing while I do other things such as dusting.  I'll take out my guitar and pick at the strings and "try" to remember how to play (I've not be disciplined enough to keep up with my guitar playing or even my little-know-how piano playing).  When I'm really feeling "well"/"good" I'll dance to my...

These Last few weeks has been very stressful for me both emotionally and physically.   I would love to share it with you all, but for now, all I ask is prayers.  Only a handful of people knows the situation, including my Pastors.  God knows the situations and hears our prayers. Last Thursday, I had not one but two people call me and ask me a similar question.  I was expecting one of the person's phone call but  not the other one.   Don't get me wrong, I was glad and always will be glad to be able to help others out and talk to people when they need help or comfort.  These two people doesn't know each other.  They don't know one another situation, their outlook on life is very different; their faith and belief in God is different. So, what is common in all 3 of us ladies?   Pain......Daily pain.   One of us has been struggling for a good while (Friend A) .   Two of us has been struggling for years...

So, it has come to my attention that I have confused a lot of people with my health issues; both "current" /ongoing and past/present/enduring health issues.  Confused still?  Yeah, I can imagine.   Let me help you out.  Well, my life long battle illness (which is most likely the root cause of most of my other illnesses) is called neurofibromatosis type 1 (NF) , which is a genetic disorder that forms tumors that causes abnormal growths in certain areas (such as the the face, ears, mouth, neck, spine, etc).  It can also cause dark and abnormal skin discoloration. Most of the time, these tumors are non-cancerous and by God's grace, I haven't had any that are cancerous.   Some of the tumor are painful in areas, especially in areas near the spine and face.   I've undergone EXTENSIVE surgeries as a child to treat these conditions including countless skin grafts to repair the dead skin/skin discoloration by having skin grafts.  I've had countless ...

Wow.  I had not realized it's been over 2 months since my blog update.   Among my usual health battles I have been have computer issues and have been functioning a lot on my Kindle recently.  I have got to admit.  Kindles are nice for "on the go" and stuff but it's hard to use when you want to type a size-able email or even a short blog!  I really do appreciate computers and appreciate my friend who is always willing to help work on my computer when needed.  I still have some kinks to work out but it's doing much better than before. In many ways there is really no "new developments" to report as in "good days" vs "bad days".   In the past few weeks lately I have noticed that my diet has once again taken a change.    I'm not sure what has brought on this new thing where pain is sharp and I get nauseated after I eat certain foods (I once was able to tolerate on a limited amount).  My pcp has increased one of my medications...

............what do you do? Many of us has encounter opportunities and had to make the decision "should I" or "shouldn't I". Either can affect your life in a little way or a dramatic way. I encountered a unique opportunity a couple of weeks ago while spending time with relatives. A few weeks ago my cousin and I got into a discussion of Buddhism. Now, don't be alarmed, I am in no ways changing my religious beliefs. We got into this discussion because my aunt had brought a beautiful piece of glass artwork by a famous Chinese Artist. It was a beautiful glass "picture frame" that was surrounded by glass carved dragons on the sides and on top. Inside the "picture frame" was Chinese writings, which I couldn't read. I was commenting to my cousin how beautiful it was and my cousin commented on how open minded I was. I wasn't sure why she said that, but I eventually found out that the artwork was ac...

I realized I haven't had an update since my last doctor's appointment which was with my ENT doctor. Today I had a follow-up appointment with my Pain management doctor. The previous medication I was put on was Neurotin which gave me several horrible side effects, one was I was feeling worse than ever. Today we talked about other options to help manage my pain. The doctors really want to push in trying all sorts of medications before opting to go for surgery to remove my appendix and possibly gallbladder. There are really no definite signs of the "need" to take it out but it was an idea that they said could possibly help; however, medication therapy is the first step. I'm not a big fan of continuous intake of medications, but then again, I'm not a big fan of surgeries either! I'm on a new medication now call, Topamax. The doctor says that the side effects I experienced with the Neurotin shouldn't be as pronounced. One side effect is low...