Tuesday, September 7, 2010

*Uncensored 2

  MS is ugly.
  Physically: You see me with my makeup all "perfect" as some people will say. Nothing is "out of place on the face!"  ;)  My skin isn't too bad; every now and then I get a little red visitor but it's nothing a battle with Proactive can't fix. A cute outfit from the TJ Maxx tops me off, because I'm uber cheap and I *love* the TJ Maxx. (Yes, I say "the" before names of places...I can't help it. I guess I'm an old lady in that way. Go with it.)
  I love shoes especially high heeled ones. The higher the heel the closer to Jesus...and the thinner the cankles will appear. How do I walk in those? Simple: Wear them to functions in which I will be seated. It's not like I go for a hike in heels. 
  I like for my hair to be the "perfect Brandi blonde shade" that, no, did not come from Jesus however, He's totally responsible for the gift of highlighting that my hairdresser bestows. My natural color is a darker blonde...kinda boring for me and it washes me out. Bleck! BUT, we don't go platinum...um, no. Just, no. 
  I don't think I look too bad without the assistance that Mac and Mary Kay offer, (though you might differ in opinion here) but I LOVE, LOVE , *LOVE* makeup....it makes me HAPPY! To me it really is like painting a canvas. Makeup is an art. ;)
  I'm a little chunky, to say the least; or, I'm curvy....better yet, rubenesque. Jordan refers to me as his pin up girl....I can TOTALLY go for that. (Thanks, babe!) So I'm not exactly fit, but not quite a candidate for the lapband either. (Sorry, Mom.) I'm skirting around it, though. I gripe about my weight and there are some things I could tweak, but overall, I've learned to accept myself. If I lose a few, great. If not, well, I'm not gonna harbor on that one right now....I've got bigger fish to fry AS LONG AS I'M NOT GAINING. That part seems to be pretty easy.
  I've already told you about the "bling things." So now that you've got a pretty clear mental image of who Brandi is physically, let's dig a little deeper and, as Jeremy (our pastor) says, "unpack."
  My testimony is posted, or will be shortly if it isn't by the time you read this, so we've established that I'm a born again Christian. Jesus lives in me and I couldn't be happier about that, thank you. Yeah, the heaven part is pretty dern amazing: I've got fire insurance! But the joy of having Him here, inside of my very heart...the walk with Him...that is what makes it so awesome to be saved by grace through faith. That is what keeps me going and gets me up, onto the floor, every morning, even when I think I can't. That is what gives me the strength to "move it" as the NMSS encourages us MSers to do.
  As I said, MS is ugly...it doesn't come in a pretty package. In fact, it comes in a mangled one full of junk and uncertainties. I'm still in the beginning stages of it: Relapsing/Remitting or RRMS. However, there are many "what ifs" and "Oh, crap, I wasn't prepared for thats" that happen here and there. 
  So aside from the chairs and walker issues, aside from the blindness and lack of writing skills, aside from not remembering what you told me yesterday (we're talking totally blocked out....as far as I know it never happened) and aside from being tired....a LOT, there are other parts to MS you may not know about.
  First, when MS blips on my radar, it can bring some friendly depression with it. My weekly injection Avonex can also cause depression. These two mixed together make for a not so happy trip over the edge and some "bad thoughts" in a person, therefore, I'm constantly being monitored by my doctor and the Avonex people. Every three months I go in and he asks me the same question: "Are you depressed?" Every three months when Avonex calls they also ask that question...only they dig: "Do you *feel* depressed?"
  So, define depressed. If you think I'm shut up in my room crying every day, not eating or talking, not bathing and "thinking unhealthy thoughts" then NO, I'm not "depressed." I'm being honest here, though, some days....I'll have one like that, minus the suicidal thoughts. Some days, I've just got to be alone and work on ME. Or I'm just too emotionally drained to do anything. If I don't call you or write you, it has nothing to do with you, I just can't make myself that day. I'm allowed it every now and then.
  I have had a little problem called pseudobulbar affect. This is where I'd just burst into tears or laughter for no apparent reason. Initially we thought it was just Brandi being overly emotional. Let's face it, I'm a girl. Sometimes I'd just be sitting and I could feel it welling up in my throat....that scream before a cry that's so painful and I didn't even know I was sad. I had no sad thoughts or happy thoughts, I'd just cry or laugh hysterically. It was really weird. As we learned more and more about MS we learned about this strange phenomenon. When my symptoms and blips were spiraling was when this would come about. It never really caused any problems it just felt strange....again, like I was losing control of ME. On top of that, I was emotionally unstable...my PMS mood swings are enough, but good grief, let's NOT add MS mood swings to that. Something else was taking over. 
  As we get a little heavier and intimate with this, I ask that you be patient with me. It's hard enough facing my fears, but to share it....I have NO idea why God wants me to do that part. Why can't I just leave the link at the side? They can read, they're bright people! His reply? They'll understand better coming from a *person* not an article written by someone who, to them, doesn't have a face and doesn't have MS. 
  Please remember that my cognitive function is a little off compared to what it was a long time ago. Along with forgetting things and having a hard time putting "sense" into dollars, I also can't remember a lot of words and my vocabulary has diminished....so I think for Christmas this year I want a thesaurus! Problem is, I'll not be able to think of words to look up....hmmm.....okay, a DICTIONARY!!! I'll just read the whole thing and try to maintain something.
  In the beginning we were told there was no pain with MS. Well, needless to say we later discovered there is. Some doctors believe it can be brought on psychologically so they don't tell their patients about it. "All MS cases are different; just make sure you tell me about every little thing that happens to you physically when you come in," is what Dr. Chander had told me.
  I never had a problem until the day I did yard work last spring. My left arm had been aching for about two weeks; again, Brandi ignores everything and sucks it up thinking it's a pulled muscle. After the yard day, I figured out otherwise. My arm was out of control! It felt like it was on fire and I couldn't even wear a shirt. Then it spread down to my legs. MS can cause or worsen RLS (restless leg syndrome) or as I like to call it, "crazy legs." I was pretty used to this when I had a blip but this was out of control...my legs would pull as tightly as they could all the way up to my chest and they were also on fire. My  body would stiffen and release all while my legs were kicking and jerking at different intervals. I'd think all was calm and then SLAM!  It was uncomfortable to say the very least and incredibly painful.  Now, I can totally handle some pain; I've given birth, I can conquer the world, but this was NUTS. I finally caved and took a hydrocodone. NOTHING. It didn't even phase it. Then I took benadryl, against doc's orders, because I knew that would calm my legs down. (I remembered it from pregnancy.) I finally fell asleep and was "jerk free."
  The next day I called and went in to see my doc. He called it neuropathy and put me on a neurontin which is an anti seizure med. It helped loads but it also helped to load on 14 pounds in a month. I came off of that mess. I'm not in any pain now. Every now and then I'll get RLS so I'll get up and walk around the house for a few minutes. Sometimes my legs ache or my arm will act up, but I can handle it. 
  There's a slight bathroom issue with MS. (Yeah, this is risque, wohoo!) We're talking about bladder dysfunction and peeing now. YAY! When I've gotta go, I've gotta go. There's no waiting. And sometimes, because it's happened in the past, if something's really funny...or maybe I'll sneeze or clear my throat...well, let's just say those nerves are effected by MS, too. And sometimes they're not finished when I think I'm finished. Praise God for liners. Some MSers have it worse than me. They can't control their bladders or their bowels at all. I'm very fortunate to not have any problems in that area. I think I can handle a little drip every now and then. I get up a couple of times a night to head to the porcelain throne. That's part of it, too. I try to hold off on any liquids before I sleep and always go right before I tuck in, but it never fails. This is called nocturia. Sounds like a fairy name! Wonder if she has pixie dust.....
 Avonex is my weekly shot and a GREAT medicine. By far, it's the best on the market and the best for me. However, I have to be careful with it. Not only can it cause depression and I've talked in the past about my "flu day", but it can also cause miscarriages. It's not FDA approved for use during pregnancy OR breastfeeding. So many people ask "Why haven't ya'll had another baby yet?" My husband is a college student and has a two jobs, and yeah, we could probably have another baby, although it would stress him out to NO end more than he already is. But in the state I'm in right now, it's not exactly the right time for me to get pregnant. I'd have to come off of my shots for three months before we could even try and with the blips still in full swing I don't think that would be wise.
  During pregnancy it's almost as if an MSer gets better with the progression of pregnancy. However, after delivery is when things can spiral again. My neurologist also doesn't want me to breastfeed the next one; as soon as it pops out he wants me to literally, while on the delivery table, take an injection. Avonex cancels out breastfeeding, I guess you've gathered.
  I'm having to pray a great deal over the pregnancy and breastfeeding issues. Does God want us to have another baby? We want to, but right now, it just doesn't seem like the road to head down. Like Hannah, I'll wait and when it's my time, I'll know it and I'll be blessed. Even if I never have another baby, look at what I do have already! What a blessing our Lilli Bug is!
  Speaking of pregnancy, (yes, we're headed further south) there are sexual issues with MS. A few people have asked me about this; I think the rest are scared. Think about it: your brain controls every single function of your body. The tiniest hair may fall on your skin and you know it because of the signals sent back and forth between your brain and the place that tiny hair has touched. If it can control your bladder and bowels it's got a handle on anything else in that region as well. Did you really think that the way you work in the bedroom just fell out of the sky? (Aside from the God part.) This is common with any normal person just as with MSers, so the same advice is given when a sexual problem may arise. Thankfully, we haven't had any severe problems in this area. (Whew!) MS fatigue can be a not so sexy roadblock, but we climb over it. Having a blip isn't very hot either, but we work around it that, too. My outlook on this sensitive subject: where there's a will, there's a way. I love my husband very much and we're firm believers in spending that intimate time together. That's a gift from God, folks! Rock it and keep it hot, MS or no MS! As my friend Dr. Rick Marks (Marriage For Life) says, "God was having a GREAT day when he designed sex." There is NO way I'm gonna let MS take over.
  Well, that was by far the most personal paragraph I've ever written and shared with complete strangers....but I know I'm not the only one. And I'm not the only one who worries about these things happening to their body.
  This brings me to my final MS fear....it's been all about how I'm affected, but what about how Jordan and Lilli are affected? Jordan is holding his own, so is Lil. They are my rocks and they know that no matter what comes our way, I'll always be theirs as well. What haunts me the most is Lilli's future. Even though MS is not inherited, the chances of getting it are higher if you have a direct relative with it. Her chance of ending up with it: 1 in 40. No big deal? Mine was 1 in 750....actually, 1 in a million. I beg the Lord to NOT let her end up with this...to save her from it. If I have to suffer 10,000 times over to keep it from her, I will. But just as I trust Him with her food allergies, I have to trust Him with this.
  I saw a woman sitting in her car recently. She was attractive and looked pretty normal to me. An older woman was sitting in the driver's seat next to her, watching her as she watched me walk by. I smiled but she didn't return the smile. She looked as if she was struggling with her mouth. I later found out that this precious soul has MS. The older woman in the car with her was her mother, and she was feeding her because she could no longer do it herself.
  Two weeks ago I watched a woman in a wheelchair give an interview on medical marijuana. Her legs and hands were distorted from her battle with the beast. She wore coke bottle thick glasses.
  I think to myself of how blessed I am that we caught this thing early. Some people wait months, years and even decades due to the many uncertainties surrounding this mysterious disease. It can also live actively in the body and the body will show no signs until it's gone far enough and finally pandora's box pops open. I only waited a couple of weeks for my diagnosis.
  I think of how blessed I am that I'm not cane, walker or wheelchair bound. I can open my mouth and tell my family I love them. I can kiss my husband with lips that move, wrap my arms around him and squeeze him and can feel him in return. I can play and laugh with my daughter. I can walk...sometimes it's with a limp, but by crackies I'll do it in glittery shoes and make it look like it's my swagger. And I can sing....I can sing my little heart out and praise my God. I have SO much to be thankful for. But in the end so do the more "unfortunate" MSers who are suffering even more than me. Perhaps they're more fortunate in a sense....they probably see God even more clearly than I do.
  I keep my God and His words so close to me, but my memory fails me more often than not. There was a verse I kept hearing from God....but I couldn't put it all together. It was too cloudy. All I remembered was "when I'm at my weakest He is his strongest." I didn't know if it was even worded correctly but I knew that's what He was reminding me. Then yesterday I got a message from my friend Haley....what a gal. She's been listening to God. She sent me the very verse I'd been looking for and trying so desperately to remember all through this turbulent week.

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:9-10
(Thanks, Haley.)

  These two women whom I spoke of above, whom I don't even know, are such an inspiration to me. No, I didn't talk to either one of them, but I know their pain. I know their fears. They fear it could get worse. But they haven't given up. I fear it could get worse. But I haven't given up, and I won't. Over the past two posts I've shared my heart, my mind and the reality of my multiple sclerosis with you...the reality of what could happen to me. I war with MS knowing that through it all, He is being glorified! My faith is being strengthened every day. I knew God was real a year ago, I've never doubted that fact. Now....now is different. I see more of Him and his hand than I ever have.
  I can't lie, I have days where it's too much and keeping my chin above water level is more than I can bear. I feel myself sinking and as the water crashes over me, the air is nowhere to be found. But I find my strength to "just keep swimming" when I lift my eyes to the hills. (Psalm 121: 1-2) It's in your prayers and encouraging words of wisdom. I find it in the scripture you send me. It's in the blessings God is pouring out on my family and me every single day and the constant reminder that he is with me always. (Matthew 28:20) From there I'm able to stand on both feet, walk on the water with Jesus in my sights and breathe in and out again. So why do I worry?  I've got all the help I need backing me up and pushing me forward. I'm human...I'm weak...That's why. But in this frail and weak body is a soul so on fire for God and his will for me. It's stronger than the body and mind. Stronger than the MonSter. It's not about physical strength anymore, but spiritual.

 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart. Hebrews 12:1-2


  Now you see that I'm not as brave as I may seem. The "bravery" you see is Christ, not me. I don't wear a cape or possess any supernatural powers; but I fight this thing with my Father in front of me every single day, bearing HIS supernatural powers, knowing that I may not win against this MonSter on earth, but I will in heaven. One day I'll walk with Him, disease free....No shots. No pain. No worries. No fear.

 

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