A JOYFUL NOISE

Last week, September 4th-10th, my parents and I were able to make a trip to celebrate my cousin, Jared's wedding.  This is the cousin on my Dad's side of the family.  Overall, our trip went fairly well.  The trip up took a lot longer than anticipated due to the high volume of traffic; but of course that was to be expected due to it being a holiday weekend.   My health and pain level probably wouldn't have been much different than if I were to be at home.  Our plan to even go on this trip wasn't fully decided until about a month or so before the wedding, due to my increased pain levels and health issues over the past several months.   We were all very glad that we were able to go and celebrate.  I did have some days of not feeling very well at all and then days where I was able to enjoy time with my parents, cousins, and family. Going to NY has always been visiting relatives and spending time with my grandparents; we never really had *time* to enjoy th...

Since my last update in May, I continue to struggle greatly with my physical self.  It's been weary and tiresome and at times, I admit I do become despondent.  It's a never ceasing battle for me; and this chronic pain I refer to is BOTH the back of my head/neck AND my lower abdominal region. I go through the day as much as I can with what I can endure.  I help out where needed, I try to go to the gym with my Mom when I can, but I don't overdo it.  End result, no matter what I do, the pain is still there no matter what; it could be worsened or the same--it depends.   ...and it's a struggle, a daily struggle; and a times a struggle that sometimes keeps me in bed in the mornings; and I often wonder how content am I, really?   I am missing out on so many things in life.  I miss being able to fellowship with my brothers and sisters in Christ or being a home group, the  once a year gathering with the Worship Team, or even just a group gathering for ...

The past three weeks has been a whirlwind of a ride with doctors’ appointments and procedures.      Suffice to say, the Lord has really granted me and my Mom a lot of strength as we went through this.  My Mom took me to all my appointments and procedures, as I wasn’t really able to go myself. First off, let me update you all by sharing with you that some of my cognitive issues (I shared with you a while back) have been getting worse—this isn’t a good thing.  This is why most of the time, my Mom accompanies me on most of my doctors’ appointments, especially these important ones regarding my pain issues and neurological issues and NF issues.   You may wonder what I mean when I say my cognitive issues are getting worse.  Well, a good example might be the following: I can be somewhere and be totally lost and not know where I am or what I’m doing; why I’m there or even what time of day it is (despite looking at my watch).  This usual...

It’s been three months since my last update and I apologize for the quiet on my end.  Lately there really haven’t been any significant new developments in my health or any other areas in my life.   The various doctors’ appointments I have had since my last appointments could have been blogged about or shared with, yet there are times my heart knows the words yet my brain can’t figure out how to write it all out.  So, here is the short version to the best of my ability. I have completely healed from my surgery back in the very end of November.   Right now, I’ve been having nerve regeneration pain which is very typical for my type of surgery for this particular type of disease/tumors.   Because of how much tumor and nerve tissue that was taken out, the pain from the nerve regeneration could take up to a year.  There are days it hurts worse than other days.      As far as my chronic pain is concerned, I still strugg...

Let me start out my explaining that this post and health update has absolutely nothing to do with my chronic pain issues that are located in my abdomen and the back of the left side of my head.   I have several complex health issues and I know that it can get confusing at time; and believe, me sometimes when I tell my parents “I’m in pain” my Mom has to have me clarify what type of pain or where is the pain I have.    It’s a bit frustrating.   So, I decided to start out this update by saying up front that this health update has NOTHING to do with my chronic head pain/abdominal pain.    This update has to do with my genetic disorder that I have battled with all my life.   This genetic disorder is called Neurofibrimototis. Background: For a couple of years, I have had on again off again pain at the right side of my temple all the way behind my ear.   I put up with it because the pain wasn’t nearly as bad when compared to the other pain I was...

For as long as I can remember, I have always joked around with others (and probably ultimately teased myself) that UVA Hospital is my “home away from home” and that the hospital and staff is my “second family.”    The thing is, everything about that statement is true.    I see/know nurses who remember me since I was a baby; I have doctors who have worked with me since I was no more than 3 years old or even some who has known me as a baby (and still in practice!).    This healthcare team will never be forgotten.   I’m always grateful for these wonderful UVA caretakers. As most of you know for the past 4 ½ years, I’ve struggled a lot physically.   I’ve been bounced from doctor to doctor.    Finally, I think I’ve found doctors (at UVA) who is willing to work with me, spend time with me, work with my other doctors, and NOT give up on me.     Today, I had a follow up appointment with one of my (many favorite) doctors. ...

There hasn’t been a huge change in things regarding my health since my last update/blog post.    My pain management doctor has tried a different form of non-steroid/non medication injection (for my abdominal pain) that seems to help some (to be explained later in the post).   It may need to take a few tries to see if this treatment works; that is, if I decide if I want to continue this kind of treatment.   As for my head pain and neck pain, my neurologist is doing all he can for now with medication therapy; and working along with my pain management doctor who is holding off other forms of treatment until he can slow down things with my abdominal pain.   In the meantime, I get some relief by going to my chiropractor/kinetic energy doctor in town.   I continue to be grateful for the doctors I have –those who are not giving up on me and trying very hard to try to find a solution to the cause of all this pain.   So far, my pain man...