I have a few new updates....as the weather has gotten colder...the pain in my hands and feet has gotten a lot worse and a lot harder to manage. My neurologist from Mayo contacted me a few weeks ago (which was good timing...Philip and I had just been discussing the situation with my hands & feet and what we should do) after finally reviewing my entire case and recommended I see a rheumatologist to look into the possibility of Raynaud's phenomenon and Lupus.
I went this past week to a local rheumatologist. He did a full exam, a series of tests (including one where he was able to look at the blood vessels under my fingernails), and a full panel of bloodwork. He has diagnosed me with Raynaud's phenomenon (http://www.raynauds.org for more info) and started me on medication to help manage it. I've had trouble with my hands and feet for several years and assumed it was somehow related to my pseudo tumor cerebri. It started getting a lot worse over the last 6 months or so and as the weather has changed, its become quite unbareable at times. My hands have become extremely weak...sometimes I'm not even able to turn door knobs or open bottles and jars. For those of you who know me well, you know I've been very hot natured my entire life....well, not any more. I stay cold. I went to the grocery store yesterday and even though I was layered with two shirts, a ski coat, hat and gloves (YES, I looked like a complete idiot walking through the store) when I got to the frozen foods, I was so cold my bones ached and next thing I knew I was leaving the store with only a few items and tears running down my face. The medicine will not prevent attacks, but hopefully will minimize them. Once the weather gets warmer, that will help...but even the cool air of an air conditioner or opening a refrigerator or freezer can cause a spasm/attack.
My doctor also ordered a full lupus screening and although it has not come back yet, he wanted to go ahead and start me on a low dosage of medication to begin treating me for Lupus (http://www.lupus.org/) because he feels pretty certain that I have it based on some things in my medical history, things he found in my exam, and the fact that Raynaud's and Lupus often times go hand in hand.
I have to be honest, while I was relieved to finally have some answers, it was also frustrating....more "labels" for my already long list under "medical history"....more prescriptions....more doctors.... When I left the grocery store the other night, I was upset....crying.....I didn't ask, "why?" or anything like that....I just cried and felt frustrated. My radio was on a commercial....then a song came on....it was "Bring the Rain" by MercyMe (which my sister-in-law, Adelaide has sung beautifully at church).....
I went this past week to a local rheumatologist. He did a full exam, a series of tests (including one where he was able to look at the blood vessels under my fingernails), and a full panel of bloodwork. He has diagnosed me with Raynaud's phenomenon (http://www.raynauds.org for more info) and started me on medication to help manage it. I've had trouble with my hands and feet for several years and assumed it was somehow related to my pseudo tumor cerebri. It started getting a lot worse over the last 6 months or so and as the weather has changed, its become quite unbareable at times. My hands have become extremely weak...sometimes I'm not even able to turn door knobs or open bottles and jars. For those of you who know me well, you know I've been very hot natured my entire life....well, not any more. I stay cold. I went to the grocery store yesterday and even though I was layered with two shirts, a ski coat, hat and gloves (YES, I looked like a complete idiot walking through the store) when I got to the frozen foods, I was so cold my bones ached and next thing I knew I was leaving the store with only a few items and tears running down my face. The medicine will not prevent attacks, but hopefully will minimize them. Once the weather gets warmer, that will help...but even the cool air of an air conditioner or opening a refrigerator or freezer can cause a spasm/attack.
My doctor also ordered a full lupus screening and although it has not come back yet, he wanted to go ahead and start me on a low dosage of medication to begin treating me for Lupus (http://www.lupus.org/) because he feels pretty certain that I have it based on some things in my medical history, things he found in my exam, and the fact that Raynaud's and Lupus often times go hand in hand.
I have to be honest, while I was relieved to finally have some answers, it was also frustrating....more "labels" for my already long list under "medical history"....more prescriptions....more doctors.... When I left the grocery store the other night, I was upset....crying.....I didn't ask, "why?" or anything like that....I just cried and felt frustrated. My radio was on a commercial....then a song came on....it was "Bring the Rain" by MercyMe (which my sister-in-law, Adelaide has sung beautifully at church).....
I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You?
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray...
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray...
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
Holy, holy, holyIs the Lord God Almighty
It was a gentle reminder for me...immediately I had God's peace. Whatever it takes, God...I'm a willing vessel!! I know that His strength can carry me through anything!!
I will keep you all updated as I find out any new information and will also keep you updated on any changes in how I'm doing. I really appreciate your prayers!!!
Please continue to keep Paxton in your prayers also. He's had a rough couple of weeks with his stomach. We thought we would see a more significant improvement, instead he seems worse. He's lost a few more pounds. Most folks won't notice much of a change in him because he is such a trouper and keeps a smile on his face and keeps pressing on (although I do feel like its becoming a slightly more visible in his little face)....but Philip and I see a big difference and are worried about him. Thank you for your continued prayers!!
I will keep you all updated as I find out any new information and will also keep you updated on any changes in how I'm doing. I really appreciate your prayers!!!
Please continue to keep Paxton in your prayers also. He's had a rough couple of weeks with his stomach. We thought we would see a more significant improvement, instead he seems worse. He's lost a few more pounds. Most folks won't notice much of a change in him because he is such a trouper and keeps a smile on his face and keeps pressing on (although I do feel like its becoming a slightly more visible in his little face)....but Philip and I see a big difference and are worried about him. Thank you for your continued prayers!!
