MCBUCK
Senior Member
posted by my daughter on her FB page.
"Thank you all for your prayers, support and concern over the past week or so.....actually, over the past 19 months. Your messages in ALL forms and phone calls mean so much to me. Please know how I treasure your kindness and all of those prayers.
I did receive my MRI results yesterday; there was good news and bad news. When we first discovered my MS I had 2 lesions on my brain. Only one was active which means, only one was causing problems. As my MS progressed over time, the other one also became active. GOOD NEWS: My current MRI showed that one of those lesions had disappeared and the other was now inactive. This is a praise I know, and I won't be discounting it at all. NOT so good news: It also showed the formation of a new lesion only this one is NOT on my brain which is the preferable place for lesions. This new one is on my brain STEM on the left side. As I said in my very first note explaining MS, lesions on the brain stem and spinal chord are the LAST place we want them to show up as this goes into causing more problems that are harder to control.
It was only a few months ago when I went to the doctor for my every 3 months routine MS checkup that he said, "You're doing great. I won't have to see you again for another 6 months." I was SO overjoyed. My MS had slowed down; I was energized! We went to the beach over the summer and I played in the sand and the ocean every single day for a WEEK! There were times when I tired so I'd take a nap or get out of the sun. It was WONDERFUL to soak up the heat and roll in the sand. A Couple of months later we went to Disney World and I walked around for HOURS everyday and enjoyed crazy rides I would've NEVER ridden before with Jordan and Lilli. I've been writing like crazy, I've been painting everything I could get my hands on, I've been singing every song that fills my ears: My life seemed to finally be coming back to normal.
Oh, but I forget.....MS *IS* my new normal.
I had pleurisy in January and it was all downhill from there. I noticed my right eye was dim and sometimes blind. My hand didn't "work". There was a night I was texting and was forced to stop in the middle of it; my hand wouldn't type. Jordan panicked. I went to bed and tried my very best to ignore it. I was in total denial. Eventually the symptoms were so bad I just couldn't walk. My right leg would drag behind me as I used either the wall or my hubby as my crutch. Not only this, but we noticed at times it would be hard for me to talk. At one time Jordan and I were to sing for something at church and I couldn't move my tongue. My teeth were even numb. The first time this happened I thought I was having a stroke and had to remind myself that this can come with the territory of MS. This was a BLIP and it started in January. By February 8, I had what we lovingly called a "pimp limp". I finally made an appointment 2 weeks ago. When I told Doc all that had been going on, he actually suggested a wheelchair.
"Um, no. That's so old lady....I'm 29." I was almost in tears.
"Well, you can get a walker or even a cane. You're wearing yourself out with the limp, though."
Here's a tip: Don't ask God to make you humble unless you're REALLY ready for it. He'll give you a cane and your grandma's "low ridah" handicap van. It doesn't get ANYmore humble than THAT. Not to be outdone by the Beast, or that van, I got a pink rose cane.....and bedazzled it with pink jewels. Now I have a pimp cane. Yes, it's quite awesome.
The blip ended last Wednesday, March 16, the day I had my MRI. Because of this we're having to guess that's what was causing the blip. I'm not having anymore symptoms (PRAISE GOD!!!) and I'm not using that wretched cane....as awesomely stylish as it was. (Gag.) When I went in yesterday I REALLY thought it was just the old lesions acting up so, you can imagine my horror when Doc said there was a new one.....on my brain stem. I got incredibly upset but, because of my makeup vanity, I held it until I made it back to my low-rider van.....then I got REALLY upset. Then I got REALLY ticked. I was able to relate to King David VERY well yesterday.....I'm pretty convinced he had MS, too.
Again, Jordan couldn't get off work to come with me. Again....I was alone in this. I didn't want to call my mom and dad...they get emotional and I couldn't handle it right then. They hurt enough for me and I didn't want them to be in anymore pain. I tried to talk to Jo but he was working alongside another employee and couldn't give me much feedback. I didn't want to call my friends. I felt so utterly alone. And I heard God, clear as a bell. "I'm here."[/COLOR]"Yeah, well I'm pretty ticked off at You right now, so...." (I didn't say "ticked", though....)
"I know."
"Don't leave me, though...."
"I won't. I never do."
"But don't talk right now...please. Just..." And He could hear the rest that my disease covered brain was crying out to Him.
Just FEELING Him in the car with me was enough.
Then like a 2x4 it hit me. All of that humility I'd been praying for was for HIS glory, HIS honor and praise, magnifying HIM. Had I forgotten that? To BE humble God would have to strip away all that was Brandi and make me totally and completely dependent on Him. That is what I asked for, isn't it? And there I was....riding in the "BarbaraVan", crying my eyes out for all of the world to point and see, wondering when the cane was going to be pulled out of the corner for use again, my body aching I was in so. Much. Agony. My heart had shattered. I was broken and there was NOTHING left of me. TOTAL dependence on my everlasting and unchanging God had arrived.
Later in the night I was sitting at Lilli's bedside saying my usual nighttime prayer for her. I told my amazing God how sorry I was and I heard Him say, "Just trust me, Bran. I've got this, I promise." And I know He does. I'm still heartbroken and yes, I've asked "why". Heck, I even screamed it. I'm STILL wondering "why" today.......but, little by little, He is showing me. I'm reminded constantly of 1Peter: "In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so your faith--of greater worth than gold, which perishes even though refined by fire--may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen Him, you love Him; and even though you do not see Him now, you believe in Him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls." (1:6-9)
So what's the plan now? Doc said I had several choices: 1. Stay on my current med Avonex. 2. Get a bigger dose and go on Rebif (3 injections a week) OR shoot up to the pill, Gilenya, which is brand spanking new on the market. I'd love to go on the pill--NO NEEDLES! However, my thinking is, "If it ain't broke, don't fix it. And I am not broken. " Some of you are thinking, "Well, it sounds like you're broken......" *Remember*, Avonex, or any other medicine for that matter, is NOT a cure for MS. It only SLOWS down progression....it doesn't STOP it. Ideally, docs want you to develop NO MORE than TWO lesions in a year. I've LOST one and only DEVELOPED ONE in 19 months. I'm doing pretty good. My plan is to stay on the Avonex and in 4 months I'll go back for another MRI. If I have new lesions, I'll more than likely try the Gilenya. Until then, I can't worry about it. I'm human and I'm sure the topic will arise as it has every single day for the past 19 months. But I have SO much to accomplish for my Jesus, I don't have time to sit and pout. I can't let MS hold me back; that's allowing the devil to win. And that ain't on my to-do list either.
Humility and dependence are what I prayed for, humility and dependence are what He's given me, and my prayer is that I can hold onto and always remember that the purpose of it all is "for the glory of King Jesus." If MS is the way He's chosen to use me, so be it. I'll do anything, no matter the cost, to help further His kingdom and win souls for Him. We roll with the rest.....pimp limp, pimp cane and low-rider handicap van."
.
"Thank you all for your prayers, support and concern over the past week or so.....actually, over the past 19 months. Your messages in ALL forms and phone calls mean so much to me. Please know how I treasure your kindness and all of those prayers.
I did receive my MRI results yesterday; there was good news and bad news. When we first discovered my MS I had 2 lesions on my brain. Only one was active which means, only one was causing problems. As my MS progressed over time, the other one also became active. GOOD NEWS: My current MRI showed that one of those lesions had disappeared and the other was now inactive. This is a praise I know, and I won't be discounting it at all. NOT so good news: It also showed the formation of a new lesion only this one is NOT on my brain which is the preferable place for lesions. This new one is on my brain STEM on the left side. As I said in my very first note explaining MS, lesions on the brain stem and spinal chord are the LAST place we want them to show up as this goes into causing more problems that are harder to control.
It was only a few months ago when I went to the doctor for my every 3 months routine MS checkup that he said, "You're doing great. I won't have to see you again for another 6 months." I was SO overjoyed. My MS had slowed down; I was energized! We went to the beach over the summer and I played in the sand and the ocean every single day for a WEEK! There were times when I tired so I'd take a nap or get out of the sun. It was WONDERFUL to soak up the heat and roll in the sand. A Couple of months later we went to Disney World and I walked around for HOURS everyday and enjoyed crazy rides I would've NEVER ridden before with Jordan and Lilli. I've been writing like crazy, I've been painting everything I could get my hands on, I've been singing every song that fills my ears: My life seemed to finally be coming back to normal.
Oh, but I forget.....MS *IS* my new normal.
I had pleurisy in January and it was all downhill from there. I noticed my right eye was dim and sometimes blind. My hand didn't "work". There was a night I was texting and was forced to stop in the middle of it; my hand wouldn't type. Jordan panicked. I went to bed and tried my very best to ignore it. I was in total denial. Eventually the symptoms were so bad I just couldn't walk. My right leg would drag behind me as I used either the wall or my hubby as my crutch. Not only this, but we noticed at times it would be hard for me to talk. At one time Jordan and I were to sing for something at church and I couldn't move my tongue. My teeth were even numb. The first time this happened I thought I was having a stroke and had to remind myself that this can come with the territory of MS. This was a BLIP and it started in January. By February 8, I had what we lovingly called a "pimp limp". I finally made an appointment 2 weeks ago. When I told Doc all that had been going on, he actually suggested a wheelchair.
"Um, no. That's so old lady....I'm 29." I was almost in tears.
"Well, you can get a walker or even a cane. You're wearing yourself out with the limp, though."
Here's a tip: Don't ask God to make you humble unless you're REALLY ready for it. He'll give you a cane and your grandma's "low ridah" handicap van. It doesn't get ANYmore humble than THAT. Not to be outdone by the Beast, or that van, I got a pink rose cane.....and bedazzled it with pink jewels. Now I have a pimp cane. Yes, it's quite awesome.
The blip ended last Wednesday, March 16, the day I had my MRI. Because of this we're having to guess that's what was causing the blip. I'm not having anymore symptoms (PRAISE GOD!!!) and I'm not using that wretched cane....as awesomely stylish as it was. (Gag.) When I went in yesterday I REALLY thought it was just the old lesions acting up so, you can imagine my horror when Doc said there was a new one.....on my brain stem. I got incredibly upset but, because of my makeup vanity, I held it until I made it back to my low-rider van.....then I got REALLY upset. Then I got REALLY ticked. I was able to relate to King David VERY well yesterday.....I'm pretty convinced he had MS, too.
Again, Jordan couldn't get off work to come with me. Again....I was alone in this. I didn't want to call my mom and dad...they get emotional and I couldn't handle it right then. They hurt enough for me and I didn't want them to be in anymore pain. I tried to talk to Jo but he was working alongside another employee and couldn't give me much feedback. I didn't want to call my friends. I felt so utterly alone. And I heard God, clear as a bell. "I'm here."[/COLOR]"Yeah, well I'm pretty ticked off at You right now, so...." (I didn't say "ticked", though....)
"I know."
"Don't leave me, though...."
"I won't. I never do."
"But don't talk right now...please. Just..." And He could hear the rest that my disease covered brain was crying out to Him.
Just FEELING Him in the car with me was enough.
Then like a 2x4 it hit me. All of that humility I'd been praying for was for HIS glory, HIS honor and praise, magnifying HIM. Had I forgotten that? To BE humble God would have to strip away all that was Brandi and make me totally and completely dependent on Him. That is what I asked for, isn't it? And there I was....riding in the "BarbaraVan", crying my eyes out for all of the world to point and see, wondering when the cane was going to be pulled out of the corner for use again, my body aching I was in so. Much. Agony. My heart had shattered. I was broken and there was NOTHING left of me. TOTAL dependence on my everlasting and unchanging God had arrived.
Later in the night I was sitting at Lilli's bedside saying my usual nighttime prayer for her. I told my amazing God how sorry I was and I heard Him say, "Just trust me, Bran. I've got this, I promise." And I know He does. I'm still heartbroken and yes, I've asked "why". Heck, I even screamed it. I'm STILL wondering "why" today.......but, little by little, He is showing me. I'm reminded constantly of 1Peter: "In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so your faith--of greater worth than gold, which perishes even though refined by fire--may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen Him, you love Him; and even though you do not see Him now, you believe in Him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls." (1:6-9)
So what's the plan now? Doc said I had several choices: 1. Stay on my current med Avonex. 2. Get a bigger dose and go on Rebif (3 injections a week) OR shoot up to the pill, Gilenya, which is brand spanking new on the market. I'd love to go on the pill--NO NEEDLES! However, my thinking is, "If it ain't broke, don't fix it. And I am not broken. " Some of you are thinking, "Well, it sounds like you're broken......" *Remember*, Avonex, or any other medicine for that matter, is NOT a cure for MS. It only SLOWS down progression....it doesn't STOP it. Ideally, docs want you to develop NO MORE than TWO lesions in a year. I've LOST one and only DEVELOPED ONE in 19 months. I'm doing pretty good. My plan is to stay on the Avonex and in 4 months I'll go back for another MRI. If I have new lesions, I'll more than likely try the Gilenya. Until then, I can't worry about it. I'm human and I'm sure the topic will arise as it has every single day for the past 19 months. But I have SO much to accomplish for my Jesus, I don't have time to sit and pout. I can't let MS hold me back; that's allowing the devil to win. And that ain't on my to-do list either.
Humility and dependence are what I prayed for, humility and dependence are what He's given me, and my prayer is that I can hold onto and always remember that the purpose of it all is "for the glory of King Jesus." If MS is the way He's chosen to use me, so be it. I'll do anything, no matter the cost, to help further His kingdom and win souls for Him. We roll with the rest.....pimp limp, pimp cane and low-rider handicap van."
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