Thankful

There are only 2 days till my neurology appointment on the 1st!!!!  So happy. :')  This nausea has been terrible.  Almost every night I can't sleep because of it.  I can't wait to hear what the neurologist thinks about all this.

Please pray for wisdom and discernment for us and the neurologist as she tries to find a diagnosis.  Pray also that things will move quickly once I see her.  My physical therapist thinks my left leg is getting weaker even with therapy. :(  He's dying to know what's going on, as am I. ;)

LOVE this verse from Isaiah.  It's one of my favorites!  "And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail." (Isaiah 58:11)  How comforting that the Lord will always guide me through the next step, whatever that may be!  Even if it's not very good news from the doctor, it's so refreshing to know that my Savior will satisfy my desire and make me strong (including my weak leg). ;)

I will update you once I hear what happens!!

When I am weak, then He is strong..

It's been a super tough week.  I usually only get nausea and dizziness when I lie down, but on Wednesday, I had bad dizziness during the day, and yesterday, I was super nauseated.  Haven't eaten hardly anything.  I should go weigh myself. ;)

Ever since the spinal tap, I've been having nausea, so something must have happened in my spinal cord when the doctor drew out cerebrospinal fluid...  That was over 4 weeks ago!  All this on top of everything else (headaches, drooping eyelid, leg weakness, CRPS pain, EDS problems, etc.) makes me miserable.

I have an appointment with the new neurologist that my pain dr. referred me to on November 1st.  That seems so long from now, but I am grateful she had a cancellation because if she didn't, I wouldn't have been able to see her till December!!  Please pray, tho,' that she'll have an even sooner cancellation before the 1st.

The "head" of my right humerus bone has been popping out, and it hurts a lot now.  My therapist tried pushing it back in, but when he lets go, it pops back out. haha ;)  I now have to try to strengthen the muscles around that area to possibly pull the bone back in.

One of my dear friends shared this quote with me. :)  "This is the blessed life--not anxious to see far in front, nor careful about the next step, nor eager to choose the path, nor weighted with the heavy responsibilities of the future, but quietly following behind the Shepherd, one step at a time.  It is tomorrow that fills men with dread.  God is there already.  All the tomorrows of our life have to pass Him before they can get to us." (Streams in the Desert, Jan. 14)

Today's a new day.  It's sunny out, too! :)  And God never gives more than I can bear.  This is the story of my life:

Little by little, we're moving forward...

Praise God, I heard back from my pain dr. today! :)  You haven't read a new update in a while because I've been waiting, waiting, and waiting myself to see what's next. ;)  Okay, soo, my pain dr. sent a referral letter yesterday to a neurologist outside of the OHSU system, and hopefully, I can see her real soon!  She only takes special cases now, and according to my pain doctor, I'm a special case. ;)

I've been wondering if I have something called Syringomyelia (it's associated with EDS) because you can get a drooping eyelid, headaches, and leg weakness with that.  My pain dr. did say today that SM is possible, but I'd have to get an MRI.  He doesn't want to take out my SCS, tho,' until a neurologist says so.  He does think that "there is a real possibility of an MRI finding pathology that changes treatment."  I'm glad he thinks so! haha :)  You're probably thinking, Why are you glad that he thinks an MRI would show a disease process?  Well, because the previous neurologists I saw weren't helpful at all and implied that these symptoms I'm experiencing are in my head!!  I had a terrible experience with them.  The attending neurologist that I saw last month in the hospital even had a resident psychiatrist with her. x[

So I'm soo grateful that my pain dr. understands and even told me he won't leave me "out in the wilderness." :)

Physical therapy has been tough.  My left leg still isn't strong, and whenever I do a certain exercise, my right leg goes out of my hip socket or something like that (EDS problems once again..).  My therapist told me to stop that exercise, and we'll discuss this dilemma tomorrow when I see him.

Prayer Requests

Off to see the ophthalmologist!  Please pray that he will be able to know what's going on with my eye.  It's starting to look sunken in...horrible feeling.

After that appointment, I have PT. :)  Please also pray that my therapist will be able to help not only my weak leg but also my right shoulder joint.  Every night now, it's been subluxing (partially dislocating)...not a good thing.  I really don't want to add dislocations to my long list... ;)  Oh the joys of EDS!

More Waiting..

I've had to do a lot of waiting lately, so this song really resonates with me. :)  Love it!

I recently read a chapter by Amy Carmichael that I wanted to share with you.  It's called "One Step at a Time," and in it, she expounds on Psalm 119:105:

"Your Word is a lamp to my feet,

and a light for my path."

This is what she said: "We don't walk spiritually by electric light, but by a hand-held lantern.  And a lantern shows only the next step---not several steps ahead."  These are just two short sentences, but they speak volumes to me!  As I still deal with my drooping eyelid, headaches, and leg weakness, I am just reminded that the Lord will guide me each step of the way. :)  True, there are probably many more long steps before me, but I don't need to dwell on those.  Just focusing on the first step is enough.

So as I wait and keep waiting for all "this" to fade away, I rest securely in the Lord!  As the song above says, the Lord is "the keeper of my heart." <3

Update: Not a whole lot to report...unfortunately, the neurologist that I saw on Friday wasn't able to help at all.  She suggested doing another EMG study, but I really don't want to do a second so soon after the first.  I'm scarred for life. ;)  One of the needles they used last time was inserted next to my left eyebrow, and they left it in for what seemed like 40 minutes without numbing the skin at all!!  I'm probably exaggerating, but the area bled quite a lot..  Now waiting to hear if my pain doctor's gonna refer me to another neurologist outside of the OHSU system.  And on Thursday, I officially start physical therapy now that evaluation's over. :)  My pain dr. talked with my therapist, and he thinks I'm "safe to be pushed." ;)

Yesterday's "Appointment"

Yesterday went so well! :)  This is actually kinda funny...I did see my pain dr. yesterday, but it wasn't an "official" appointment like I thought it was going to be.  I learned that if I ever need to see a St. Jude rep, the pain center has to book a room under my doctor's schedule which is why it showed on MyChart that I was gonna have an "appointment" with him. ;)  Anyway, I did see my pain dr. for a few minutes because I wanted him to check the area next to my SCS anchors where I had the spinal tap.  It's been bothering me the past couple days, and I thought it was getting swollen, but my pain dr. thinks it looks fine.  He said the area probably got irritated after the tap because it was done so close to my anchors.  So I stuck a Lidoderm patch over the bump, and it seems to have helped! :)

PT was great!  My therapist did a very long assessment and spent about an hour and ten minutes with me! :)  After my appointment, he said he was gonna try and catch my pain dr. during the lunch hour and speak with him about all that he found.  My leg is soo weak and has atrophied.  I also have decreased sensation on the whole left side of my body.  He said I should hear from him by Friday about what's next.

Tomorrow

Would appreciate your prayers tomorrow morning.  My pain doctor's office called today, and he wants me to come in again tomorrow even tho' I just saw him yesterday!  Praying it's not bad news...  This is kinda unusual for him to want to see me so soon..  I will let you know what happens!

Long day tomorrow.  I'm also seeing one of the St. Jude Medical reps so that he can add a new program to my IPG where the stimulation is stronger in the left foot this time.  Then at 11 AM I have physical therapy. :)

Good night, everyone!

Waiting

Okay, everyone, more waiting to do.. haha ;)  Actually, I'm getting kinda used to it.  Anyway, I saw my pain dr. this morning bright and early!  Aside from the ptosis (drooping eyelid), there's a possibility that the headache and leg weakness could be CRPS-related, but he has to think about that more..

I'm one of 3 CRPS groups:

1. a person who gets CRPS but goes into remission (e.g., they can say they had CRPS)

2. a person who gets CRPS in, say, the foot, and it stays there and doesn't spread at all

3. a person who gets CRPS and it becomes a whole-body spread (e.g., from the right foot, to the other foot, to the left hand, to the arm, to the back, etc.)

Can you guess which group I'm in? ;)

You got it!  I'm group #3!

Soo, there very well could be some direct correlations..  But, as I said, he'll need to think more on that the next few days..

I see the neurologist this Friday, and hopefully I know for sure then whether I have Myasthenia Gravis or not.  Although my electromyogram study which can test for MG was perfectly normal, the Acetylcholine Receptor Antibodies blood test I had done in the hospital came back slightly positive (the lab they sent it to sometimes gives false positive results for some reason), so they redid the test and sent it to the Mayo Clinic in Minnesota.  Isn't that cool?

Oh yes, I start physical therapy on Wednesday so that will be good! :)  I gotta get rid of these crutches!