A Very Abbridged Update

Dear Refuge of My Weary Soul*

Indelible Grace

Dear refuge of my weary soul,
On Thee, when sorrows rise
On Thee, when waves of trouble roll,
My fainting hope relies
To Thee I tell each rising grief,
For Thou alone can heal
Thy Word can bring a sweet relief,
For every pain I feel

But oh! When gloomy doubts prevail,
I fear to call Thee mine
The springs of comfort seem to fail,
And all my hopes decline
Yet gracious God, where shall I flee?
Thou art my only trust
And still my soul would cleave to Thee

Though prostrate in the dust

 Hast Thou not bid me seek Thy face,

And shall I seek in vain?
And can the ear of sovereign grace,
Be deaf when I complain?
No still the ear of sovereign grace,
Attends the mourner's prayer

Oh may I ever find access,
To breathe my sorrows there

Thy mercy seat is open still,
Here let my soul retreat
With humble hope attend Thy will,
And wait beneath Thy feet,
Thy mercy seat is open still,
Here let my soul retreat
With humble hope attend Thy will,
And wait beneath Thy feet

*Recently, this song has been my comfort and joy for my heart whenever I feel defeated, afraid, or having a feel of a weary heart (Sidebar: I know that I’ve posted several different songs on my blog and said “this is my favorite and it always ministers to me.  You may be thinking (and I totally understand this) or maybe you aren’t thinking, I must pull out any song “from a hat” because I like that song.   Well, if I had to be honest with you, all the songs I post here  and share with you ARE beautiful; they are some of my favorites, and I do love singing them.  But, I do not just randomly choose songs to share.  Whenever I’m struggling physically, mentally, and emotionally, God points me to His Word: a particular Bible verse as well as a particular song that ministers to me well and that I can use to remind myself of His faithfulness, goodness, and love.  This past Sunday (11/3), at church, we sang many of my favorite songs, but one in particular was another song that has ALWAYS pointed me back to Christ.  It is by Matt Boswell “Christ My Sure and Steady Anchor”.   I firmly believe that God always brings you to the exact Scripture/verse, song, etc. that will not only get you through your current trial, but also the “tough road” anyone has to continue to travel).  


I’ve probably played this song over and over again multiple times a day. It encourages me; it gives me hope and reminds me of the goodness and graciousness of God.  It reminds me of His faithfulness and that I am to always cleave on to Him.  So often we are wrapped up in the “how”, “why” “ifs” in our situations, predicaments, trials, etc. We try to figure everything out ourselves until we realize that we need to go to our one and only source of Refuge.


You probably noticed I haven’t posted much updates recently.  Mostly because I’ve been dealing with a lot of increased pain, decreased energy, a lot more head pressure and scalp pain from where I once had a huge NF tumor removed.  I may end up getting an MRI done before the end of the year because my neurologist is concerned that it could be a regrowth of a NF tumor on my brain.  If it is, I will of course, see my surgeon.  However, if it isn’t, it would more likely be referred pain from my migraines.  Please keep me in your prayers that this is just the referred pain and not a tumor on my brain; I really don’t want to go through surgery, although I understand its necessity.

Since my last official update, I’ve had doctor’s appointments almost every week (no joking).  I’m STILL struggling with my hip and leg injury from the fall back in August, so I’m doing a lot of hydro-exercises in our gym’s therapy pool. I go into the pool whenever I have time and feel up for it.   Doing exercises in the water with my trainer seems to be less strain on my body than doing floor exercise, but I still need to be careful how much stress I put on my body because there are days I still come home in pain.  I really really, do won’t be get an injection from my doctor or another scan, but I guess if he needs it to treat me, I’ll have to go for it.  Those of you who know me well, knows that I’m terrified of certain types of treatments. Ugh! 

 I have been struggling with a couple of changes that may need to take place regarding my health and plan of care.  First off, with my head pressure and chronic migraines, both of my neurologists and I will be discussing what plan of care is better for me.   As you all may know, in the early part of the year, one of my neurologist decided to switch me from Botox to the once a month Aimovig injection to see if my migraines would calm down each month, so that I could get off some of my medication that could be causing some of my cognitive difficulties (this is not definite, but it’s a theory). The Aimovig did cut down some of the migraines, but my head pressure and spasms started to increase.  Also I started to loose hair and have some water retention.  I’m still on Aimovig, but I do not like the side effect, yet I like how it is helping decreasing the migraines.  The Botox may have helped the pressure pain, and it did help the migraines, but not as good as Aimovig did (plus Botox was every 3 months, while Aimovig is every month.  I’d choose every three months to get stuck by a needle over anything, but that can’t be my main reasons).  Also Aimovig is astronomically expensive PER MONTH! (we are talking about hundreds of dollars)   My Plan of Care team of doctors tells me that I make their job hard because I’m such a complex case, due of my health issues, neurological issues, etc.  I tell them I just like to keep them on their toes. Ha!  Having a team of physician is nice, but then you never really know who to direct questions to because Doctor A  will ask you “did you talk to Dr B; then Dr. B will ask you if you talk to Dr. A, and you said “Dr B told me to talk to Dr A and then everyone gets confused so they bring Dr C into the mix.   YEP… that’s my life folks!  Exciting, huh?  (go ahead and laugh….I know you are/want to….I do all the time.  It’s the only way to get though the myriads of doctors!).

So that’s a brief synopsis of where I am today: possible MRI for my head to check for NF tumors; possible in depth treatment for my hip and leg

Thank you again for all the prayers, care, love, and concern you all have shown me over the years.  I’m grateful to all of you.