Today's blog entry is going to be all over the place, so I thank you in advance for sticking in there with me through it...
The past week has been a whirlwind for us.
On Wednesday of last week, we had an appointment with my new neurologist, whom I like to refer to as Mr. Wonderful. This man has been such a blessing from God. He listened to us, and didn't pull the stuff that the first two doctors did.
Doctor #1 had the audacity to say to me, "I'm going to give you two choices, and you have to pick one. The first is that I can tell you everything that is wrong with you, but I won't make you better....yet, you'll leave knowing what is wrong.
The second choice is that I'll make you better, but I won't give you any answers.
Now, which would you choose?"
Stupid. Just plain stupid.
I should have held my Horshack hand up and waved it wildly in the air and said,
"I know. I know! Pick me! Pick me! I choose that you're a moron and you've just wasted my time! I choose that you pay ME for this appointment!"
OK...I forgot to tell you, I'm on big time steroid treatment right now, so this is your fair warning for some roid rage. :)
Doctor #2 - this is the one that I saw after the first MRI was done. This doctor's best answer was to put me on a mild anti-depressant, which she said would also help the seizing in my hand. I looked at her and said, "I gotta tell you, I'm not excited about being on an anti-depressant."
"Because I'm not depressed."
"Well, you are anxious."
"How can you meet me for 15 minutes and tell me that I'm anxious?"
"You aren't sleeping."
"I've NEVER slept! I'm a type-A personality. I've got stuff to do, dreams to dream, people to share the Word of God with, mountains to climb, places to go, people to see..."
OK, so I didn't really go into it that much, but that's the truth of it. Sleep is a chore. However, the truth of that statement has become all too real as of late...sleep is hard to come by with MS, sometimes, and then the after effects of not getting enough are really burdensome.
Note however, that Dr. #2 totally dismissed my concerns about MS by saying, "This is a 30 minute appointment, and I really have to go. If you Googled those symptoms that you're reading to me, you'd see they all come back to Epstein Bar.
I wish that I had said to her then, "I HAVE Googled them all, and that's why I'm here...with my MRI in hand, and my list of concerns....why can't I feel my hands? Why can't I think straight? Why does my face seize? Why does it just about kill me when my friend or child rubs on my right arm? Why, why, why?"
But alas...there wasn't time in the appointment for those questions....
I think I should break for a bitterness-confession session.
I realize that I'm all over the place here...but after that is when we landed with Dr. Wonderful. He listened to us, he did his due diligence, he studied and restudied the MRIs, he called for new ones...HE DID THE JOB OF A DOCTOR!
One huge thing I've learned from all of this...if you're ever in need of a clear diagnosis, look for a Doctor who is a researcher. This is my doctor's heart, and I think it's what makes him so good.
He's also very humble. Even in the hospital when we were about to be released, he said, "Please know that if you want to get a 2nd opinion, I want you to do that."
I looked at him and said, "I've found my doctor. You are an answer to prayer."
To which he bowed his head and said, "Thank you, thank you. You're very kind."
So, here's the gist of it...
I'm not dying.
I am uncomfortable, and there are things in our life that will be changing, but we'll take them as they come.
I was in the hospital for 5 days, in which time I had 5 days worth of iv steroids to stave off the episode that began last Thursday night/Friday day.
I'm now on a 12 day steroid plan that is being administered at home.
My doctor, Mr. Wonderful, has found drugs for all of the nerve pain that are non-narcotic, yay!
I can already tell that they are helping, and no one is going to be beaten in my home, so that's a great side benefit. ;)
I hate taking narcotics! Then add narcotics + steroids....ooh, not good!
I'm tired, and weak, and having a hard time walking...but I think all of this will balance itself out as my body gets used to the new medications.
Balance itself is tough right now...so I look forward to having it back again.
Now, I'm going to make a brief list of things that I'm thankful for today, it is in no way exhaustive...
God has used this present challenge as a platform for so many amazing conversations.
He gave me overwhelming boldness in the hospital...I got to pray over 2 chaplains, the sweet pregnant teen who rolled me to the car (whom I applauded for her choice to give life to her baby), the young man who brought my food each day...someone who had clearly just been born out of a world of darkness and who excitedly told me about his new baby girl, Genesis. We held hands and prayed for her, that God would raise her up to be a world changer for His Kingdom.
Also included was the young man who drew my blood, whom I was just led to ask, "Do you know Jesus Christ as your personal Savior?"
"Oh, yes ma'am. I sure do. I gave my life to Him 5 years ago. Now my wife and I are both living for Him."
People...these were not your usual hospital room conversations!
Truly, there is a boldness that comes out of weakness...we get to choose how we use it, will it be for God's glory, or against it?
I certainly wasn't perfect during my entire stay. I am on a fast track of learning right now...and my body feels like it's on a roller coaster, but I'm going to do my best to honor God through all that comes at us.
After all, I choose to believe that this is a platform that He's given us.
Oh my, I really could go on and on and on about all that God did during my time in the hospital, and about all that He continues to do...that will be another post, I suppose.
So many of you have asked what you can do to help, and so I'm going to be totally transparent with you here, and let you know....
First of all, that the meals you have been bringing are such a huge blessing to us right now! We're trying to figure out medications, and tend to tender kiddos, and grieve over not getting to go on our vacation, and...and....and...
And, we had used up all of our food in preparation for going out of town...so thank you for the meals! They are huge!
To Ashley and Sandy...oh, how I've come to love you both even more these past few days. Thank you sweet friends, for just stepping in and being the hands and feet of Jesus. Thank you to Kim and Lee and Peggy Sue, and Pastor Dave & Jodie, and Davina, and Laura and Carrie, and Jeanna and Janet and Chris and Candyce...and...and...wow, I'm so blessed!
I can't fail to mention Natural Home Solutions...can you believe that our pest control company sent me a huge basket of pampering items?! How thoughtful is that?! See why I love them? It's scorpion season in AZ, so there's my plug...call them! ;)
I'm going to go back to the request area for a minute...as silly as it might seem, this is my #1 right now...
One of the things that has been the toughest has been not being able to sleep. Even with medication for it, there are just nights that rest is hard to grasp.
I want very much to turn our middle bedroom back into a bedroom. If I could have a comfortable bed in here, I could use this room on nights when I can't seem to fall asleep, or when I can't stay asleep.
I have this vision of a pretty place...I think that would be quite nice, having it be pretty.
But you know me, pretty doesn't ever have to mean expensive.
So...here are my requests:
#1 - A twin sized day bed, preferably one with strong wooden sides (to help me pull myself up). I'm thinking of one that looks kind of farm-housey. Is that a word?
#2 - An old farmhouse like table...you know, everyone in the world had one of these a decade or so ago. I'd like to paint it black, and use it as my computer desk. The one I'm using now is very painful to sit at, as the way it's cut hits my arms at just the weakest point.
#3 - A tall file cabinet.
#4 - Black and white toille bedding set. Used is good. :)
I read recently, in a book that my sweet friend Lee bought for me (I love you, girl!), that upon discovering that one has MS, there is a deep need to put life in order. I've been feeling that for some time, and I guess that's what I'm saying...I need to put this area of my life in order so that when my body needs sleep, I can escape and get it, without feeling like I'm disturbing Shane.
Does any of this make any sense?
Oh, there's so much more to tell, but I am exhausted, and must go and rest now.
I love you guys so much, and thank you from the bottom of my heart for each and every precious prayer that you've sent up on our behalf these past few weeks, months and years.
May you rest easy tonight, knowing that you are precious to the Lord.