"This illness is to fatigue,
what a match is to a nuclear bomb.
It's an absurd mischaracterization!"
~Laura Hillenbrand

September 30, 2007

An update

I've had quite a few emails and messages from caring friends, wondering how I'm doing. I haven't been heard from much in the past two weeks... not much email, not much online chatting, no blogging, and not even much eBay group visits.

So, I thought it only fair to all those who have been concerned, to give a quick update.

I have been quite down and out this past couple of weeks. Don't know why or what is going on - may just be one of those cyles I have to endure.

Last week, I saw both my Family physican and the Nuerologist (who I see about once a year). Both are concerned and strongly encouraged me to take advantage of an offer I've had to go back to Vanderbilt University.

I will be having some nerve testing this next week - at the same time and in the same building that Bill will be seeing a Rheumatologist for probably RA (a condition he's suffered with for years, but we've decided it's time to get it under control with medication).

The nerve testing can be pretty painful - but will be very helpful in discerning the cause of some of my newest symptoms. She also ran a battery of tests through bloodwork which will also be helpful.

After long, hard processing, prayer and consideration, Bill and I have decided that the very difficult trip to Vanderbilt is our best option right now. The specialists there are up to date on all the current research and there is one doctor in particular that I really connected with when I was there in July of 2006.

However, unlike July 2006, there is no way I can make the trip myself. I am even concerned about how I will do traveling with help. So Bill will have to travel there with me, come home, travel there again to pick me up and travel home again. Poor guy - what a sweet husband I have!

I will be there as a study patient again - though for very different research. I will get the sleep study I so badly need, under the watchful eye of a ANS specialist. I will participate in several other studies including one that has been recently funded by the CFS Association to research the connection between CFS and ANS dysfunction. But the best part is that my favorite doctor will be there the whole time and I will be able to pepper him with my questions.

I don't leave until November so I'll be blogging again - several times, I hope - before I leave. But this is the latest news in my life,living with a strange, unusual, and, as of yet, undefined chronic illness.

You can pray especially for my "Patient Endurance". It's been down in the lowest numbers lately. Pray for my relationships with all my loved ones and that I will continue to strive in my Primary and Secondary callings in life: to Love God and to Love others.

Thank you for checking in on me!
(No, sorry... no new art to show this time. BUT... be watching! I have a friend traveling through Italy on a garden tour right now and she's taking lots of pictures for me to paint! I can't wait!!!)



PS: Do any of you have a MySpace page? I have one Click Here I just updated my page with a beautiful fall background!

3 comments:

  1. Oh Melanie, I am so glad you posted an update just to let us know where you are at and how you are feeling--and were honest about it all.
    I haven't been on email much at all lately myself--but for different reasons--which obviously I won't go into here! I have noticed how quiet you are though and the that I don't see your 'dot' light up on email to chat.
    I know you are going through a very difficult time. And the lack of answers, the unexplained deterioration in health can certainly create a dark night of the soul.
    I am glad that you will have more testing done, am so sorry Bill has his own health issues to deal with, AND...and am also thankful that you are going to Vanderbilt and feel good about that decision. It does sound like the studies are a good fit for you and might give you some answers. I hope so.
    Much love,
    Emily

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  2. I know it's difficult to travel for our health care or to get a diagnosis but your hubby will be with you and you know that God will be with you all the way. Try to keep us updated.

    I pray that you feel well before the trip so you can rest your body and mind to be ready.

    Blessings to you my Sister in Christ!

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  3. My dear Melanie, I know you are going through so much right now. Praise God for the opportunity to go back to Vanderbilt and to meet with your favorite doctor face to face. You and your family are in my thoughts and prayers.

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