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I've done this in a Bible Study Book Form. Enjoy
Finding God In Multiple
Sclerosis
Table of Contents 1. Life Is Good 2. Searching The Web 3. . The Symptoms 4. The Diagnosis (Tests etc) 5. Telling My Family 6. Support Groups? 7. Discovering Heat 8. The Promise 9. We're Moving *aka major attack* 10. Exhaustion 11. The Hunt For A Doctor 12. Dealing With It In Church 13. Progression Means No Faith? 14. Why Is This Happening God? (Major major attack when I was promised Healing) 15. God Is In Control. 16. Why No Panic? *summation* *Talk about God* 17. Resources on the Web 18. Medications 19. Tests 20. Newest Information 21. God's Information
Chapter One
"Life is good." I smiled at my husband as we drove down the road from Baton Rouge where we had just enjoyed a wonderful Chinese dinner. He glanced at me quizzically. I reached over and squeezed his leg. "Do you know how much God has blessed us?" "Yes," he replied in his simple way. I knew he really didn't understand. He couldn't because he didn't know what I was talking about. Men had a way of that. When a woman wanted them to agree, they didn't, but when a woman want a man to question her, he played dumb. So, I continued, "We're out of debt finally. We have extra money every month. We can go out to eat when we want, buy what we want. We have a great church in Cornerstone. And Christina and Jeremiah are older and I am going to be starting back to college—finally." "I know." Okay, that was my husband, Steve. He always answered with such simple questions. "No you don't," I said perturbed that he didn't ooh and aww like I did. "What's the matter, Cheryl?" He glanced my way as we stopped at a light just short of our destination. "Nothing." Oh, he hated to hear that, and that was always my answer. He sighed. I sighed. "I wanted you to make a big deal over my comment." He shook his head and then chuckled before popping the clutch into first. We went through the light, right off of Plank and toward home. "I am excited. You know I don't show it like you." I knew I'd overreacted, so I changed the subject. "You really don't mind me returning to college?" "Of course not. You know I support you in everything." And he did. I had to admit that. We turned onto Spike Ridge and were at the house almost immediately. When we climbed out of the truck, you could smell the honeysuckle from the backyard. The thick humidity held in the smell, filling the air even this far away. We lived in a doublewide mobile home on a 1/3 of an acre of land. It was our first real home. We'd been here four months now. Moreover, I was so proud of our house. Four bedrooms, garden tub, perfect sized kitchen, and I’d had two telephone lines put in, with lines in every room. We had planted a Japanese Magnolia in the back, along with pear, apple and peach trees, muscadines and grapes. In the front, I had bushes, flowers, and mums everywhere. I tossed a quick glance at the bushes, noting they, and the jasmine, needed trimming. "It sure is hot out today." "Not as bad as some days." "The humidity." He agreed. We'd lived through Andrew and been without power nearly two weeks. I thought nothing would ever compare to that heat. It had not been pleasant. Baton Rouge was a big city, filled with the nicest people on earth and I thought it was because, if anyone could live down here in this humidity, they had to learn patience and gentleness. I went to the stairs and groaned as I started up them. "I feel old." He laughed. "You're only thirty-eight." "And you are thirty-nine," I grumbled. He passed me on the stairs and opened the door. My daughter was out with friends and our fifteen-year-old son was spending the night with his best friend. I went to sit down and groaned again. Steve went into the other room. I thought I'd stand up, but changed my mind. Both of my legs felt—fatigued. There was no other word for it. I ran my ands over the top of my thighs and thought how weird that those muscles on both legs were bothering me today and feeling—fatigued. My sharp mind focused on nearly twenty years ago when I'd worked for the ambulance service in Lawton Oklahoma. I remembered something from my paramedic training. What had it been? MD? MS? One of those muscle diseases or something affected you like that. I immediately shook it off and laughed, looking down at my dog who stood there. "I'm being silly, Yackadoo. I'm such a hypochondriac!" Steve came back in and we had a great night watching TV together. It would be eight months later that I would remember that night.
"So the ER doctor sent you to me? If you are Dr. Williamson," I replied. It was April and I was having vision problems. I had gone to the doctor on Sunday in the ER and told him I was nearly blind in my left eye. When looking at things, I saw trees instead of people. Everything was gray. And he'd insisted I go to a specialist the next day. I thought I was seeing Dr. Williamson that morning when the PA had sent me to get an angiogram and done all kinds of test. But this was not the same person I'd seen. "I am. And I am the one you thought you were seeing. The other one was my brother." Big family, I thought. I was glad to know of the mix-up. "Let's look at your eyes." I glanced at Steve and he nodded that he was with me. He wore a concerned expression. He wasn't much of a talker and people always thought he angry until they got to know him. The look on his face would have scared Gabriel himself, but I knew it was concern. "What about the blood in the eye the other one saw?" I asked as I seated myself in the chair. Dr. Williamson picked up the tools and began examining me. "This isn't anything abnormal," he said. "True he was worried about your diabetes, but this isn't from that. It was only a speck." I trusted him because I didn't know much about eyes. "Well that's good to hear," my husband said from behind me. "What about macular degeneration?" What? Even though I'd been in the medical field, my husband surprised me with that. All I knew about it was that it had something to do with the eye. "No, that's not it." He put the tool away. "So, have you had any other symptoms, no matter how odd they might seem, lately?" I was in my second semester of college and in the last two months for no reason at all, around 4:30 in the afternoon I had to lay down for a nap. It was only a ten-minute nap and then I was wide-awake. We'd thought it might be high sugar or something. But that was weird. "No, not really," I replied, wondering about that or…. I knew my husband was right there and I didn't want to mention anything in front of him that might worry him. The doctor nodded. Then slowly, carefully, without looking at my husband, I said, "Well, some slight muscle fatigue in the tops of my thighs." There was a shift in the room. I don't think the doctor ever changed his look, or maybe he did slightly. Or it might have been all of those years working in ER around doctors. But I knew. Oh yes, I knew. It was that 'm' thing. MD or MS. Agh! I just couldn't remember! I needed to go home and search it. "I think we're going to do an MRI on you. I'd like to do evoked potentials, which will tell us exactly where the damage is in your eye. Can you go over to the office today?" The Williamsons were known all over and their reputation was top notch. They, in my opinion, were some of the best ophthalmologists in the southeastern United States. "I don't know," I began. "Yes, we can," Steve cut in. He sensed it was suddenly serious but had no idea what was going on. I simply smiled and hid my own fear and said, "You ready to go?" He nodded and we headed for the Williamson Eye Center. # Before I go on, let's talk about the experience. Whether it be diabetes, heart disease, cancer, everyone has a reaction to bad news. Some people deny it. Others laugh it off. Others do the bait and switch method. They fear, but try to find other problems to focus on. No reaction is wrong. It's simply a human's way of dealing with the problems. I have to say, however, I cannot imagine how someone who isn't a Christian handles this. I'll get a bit ahead of myself here and say that I read other people's stories on the web and was shocked to discover families broke up over the diagnosis, people went into a deep depression—not as shocking—and others admitted they were so relieved to finally know what was wrong (I fell into the last category). Reactions differ. But in any diagnosis, the most important thing to remember is that God says He is the Great Physician Isaiah 5 But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed. What we must always remember is that God is in Control. So let’s talk reaction. If you’ve picked up this book then you must know someone who has been diagnosed with MS, or perhaps you, yourself, have been diagnosed, or a loved one. You’re in shock. Disbelief. Fear. Oh, the emotions that goes through a person. Relief, a need to know, a desire to read all you can. You name it, emotions are roiling through you. In addition, you have a story to tell of how you or your friend was diagnosed. Or maybe you don’t. Perhaps, like many, you’ve chosen not to tell anyone yet. It’s okay. And understandable. It’s something for you right now to digest and get used to. Reading this book is a first step, because, unlike other places you might find information, this book isn’t going to forget the most important source of information. God. I’ve read many books and they’re fact based. Most don’t go into the emotions of having the disease and I don’t think I’ve read one yet that shared what a Christian felt going into the diagnosis. Christians have a different perspective than anyone else. Because we are told we have a hope—and that hope is Christ Jesus. He will take your hand, hold onto you, love you, keep you safe as you experience all of these emotions. Why? Because He has been through it all. And He had to go through it alone. Remember the night in the garden, He said, can’t you just stay awake an hour and pray with Me? Therefore, He knows what it’s like to get a diagnosis and have to go through it alone. His diagnosis was, You are the cure for the sin problem and You’re going to have to die. Though He knew it, when it actually came down to it, He asked for a way out, if it was God’s will. Many people when they first find out ask the question, why? Why God? Why me? What’d I do? I don’t think God minds you asking. Jesus is our example and didn’t He say, please let this cup pass by Me… So know that you can go to God and say why. As long as you are like Christ and remember that God is in control and He has a plan for your life. I believe God can heal from this disease. I have heard of people who believe God has touched them and healed them. I know others who haven’t been healed. You might say, well I haven’t been healed. Why not? My answer to that? God is in control. You have to turn to him and trust him. Cry out to him. And get rid of the fear. The enemy will feed on that fear. How can we get rid of that fear? To read. I would suggest two things to read. One. Research the disease. Two. Open your Bible. I’m going to help you with the latter every chapter. I will also give you pointers in each chapter about the disease too. I hope that by the end of this book, you’ll have a grip on your life, the disease and be ready to go kick the devil in the teeth. So let me hold your hand right now as we talk, dear one. You’ve been diagnosed with a horrible chronic disease that affects each individual differently. The next chapter we’ll discuss that. You are scared, confused, angry, out of control, needing information—you name it. You need to turn to God first and let him get hold of you before you go to your family and confess this horrible disease. Or to anyone else. You will encounter a lot of negativity, a lot of, you poor thing. If you aren’t grounded in God, you’re going to find it hard to go on. So, get out your Bible right now. I want you to read the following verses. And I want you to write what you find in each verse. What each verse means to you. 1. Verse 1 2. Verse 2 3. Verse 3 4. Verse 4 5. Verse 5
Now I want to pray with you. Heavenly father, we come to you right now in the name of your son, Jesus Christ. We know his blood covers us so we can boldly approach you. We worship you for who you are. Not for what you have done for us, but simply because you are God. You are Good. You are Just. In addition, heavenly Father, Abba Father, you are in Control! We ask you to take this experience we are going through, to touch us, shape us how you’d want us to be, give us courage to step forward and be a shining witness for you as we go through this trial. We thank you that You, heavenly father, Abba, are in control and that you, Abba, love us, and are here, holding our hand, pulling us into your lap, and holding us as we cry, as cope with the news of what has happened to us. We know we aren’t in a sin free world and are all sinners. And disease is one of the results of the fallen nature of the world. We ask that you show us what is going on, touch us, heal us, and use us to reach others while this trial is going on in our lives. We love you, heavenly father, and thank You that you are in control. Guide us over the next weeks and months to come, lead us how you would have us go. In your son’s name. Amen.
Now, dear one, I want you to use the next blank pages here as your journal. I want you to write down what you are feeling about the disease, what fears you have, what hopes you have. How it has affected you and others you’ve told. I want you to especially focus on the good on the last page and write down what you think you have learned this past few days from what has happened to you, or maybe how you can see God in all of this. Perhaps you got to witness to a person who said, I just don’t know how you can handle this and not be in pieces. Or maybe someone came to you and said, you know, God has really helped you through this and they tell you what they’ve seen. Look at what has happened this last week, write it down, and then write the results.
Insert four pages here for writing.
(hint, this is a book in progress! LOL So you'll see a lot of notes like
the above that don't have anything to do with the story).
Chapter Two
“Whatcha doing?” I jumped, not having heard my husband walk up. I resented the intrusion and quickly closed the webpage. Turning, I smiled. “I was researching MS on the web.” He had that lost boy look on his face. I wanted to comfort him, but wasn’t sure how. I had received a copy of my MRI report and it had said I had plaques, consistent with a diagnosis of MS. I didn’t understand what plaques meant exactly and had gone to a site I’d found to see. I was still playing it cool with my family, not wanting to upset them because well, frankly they were overreacting. I glanced toward the other room. “Where are the kids?” “Watching TV.” I nodded. I held up the paper. “This is pretty conclusive. I’m pretty sure when I go back to the doctor, they’re going to say it’s MS.” The look on my husband’s face broke my heart. He had trouble sucking in a breath and I wanted to cry. I felt so guilty. He hadn’t signed on for this. My kids hadn’t either. “I’m sorry.” Immediately he leaned forward and hugged me. “You don’t have anything to apologize for.” I fought the feeling of tears and smiled. “I just wish you didn’t have to go through this.” He shrugged. “I’m’ worried about you.” I shook my head. “I’m fine. I’m getting some of the vision back in my eye.” “Isn’t there anything they can do for it?” I turned back to the computer and started typing in a webpage. “I found this site, www.msactivesource.com which is for some medicine called Avonex. It has a really good bunch of information. Do you know, when I was in the medical field years ago they didn’t have medicines. But in the last ten years they’ve come out with a bunch of new treatments. I’m really lucky.” Steve came forward and looked over my shoulder. “See here,” I pointed. “This is a medicine that you inject once a week.” “Needles?” “Yeah. Well I can’t swallow pills so I’m really lucky that it’s in shots.” I chuckled and so did Steve. At 38 and I still couldn’t’ swallow pills. “It says here that Multiple Sclerosis affects the brain and spinal cord.” “Not the muscles?” Steve was surprised. “Well, not exactly.” I thought. My brain hurt from all I’d read. “Think of it as a cord on a lamp. You know the plastic around it that keeps you from getting shocked and covers the wires? The insulation.” My husband loved that stuff. He nodded. “Yes.” “Well your nerves are like that. It’s called myelin. And for some reason, your body suddenly decides that the fatty tissue, or the insulation around your nerves, is the bad guy and starts eating away at it.” Steve grimaced. “Yeah well…where it eats away is like a bald spot on an electrical cord. The frayed cord doesn’t transmit the electricity very well to the plug so the light doesn’t work all the time, sometimes flicker, sometimes going out totally if the wire is completely broken. It’s the same with your nerves. If the tissue is missing, then the impulses that tell your legs to walk, your arms to lift, your eyes to see work slower. If it breaks the end of that nerve, called an axon, then it stops working all together.” I could tell he didn’t quite grasp it. “Some of the damage I have now in my eye will get better over the next six months as the fatty stuff grows back,” I explained. “But if it had really bad damage, then I’ll have some area that doesn’t get better.” That little boy look was back and he slipped an arm around me. I had noticed since a couple of weeks ago when the doctor had mentioned the problem, he had not stopped touching me. He hugged me, he had to have his hand on me when we drove, at night he suffocated me trying to hold me. And I was never alone now. “I’m not going to tell the kids until I finish looking at these sites and the doctor makes it official.” He nodded. “You said sites?” “Yeah. I found one called www.multiplesclerosis.com and one called www.mswatch.com . That one has to do with a medicine that I think it was a polymer.” “Hey I work with those.” I laughed. “Yeah they’re putting gasoline in me with that?” He shook his head. “No it’s a plastic from the refinements of petroleum.” I groaned. “You and your lab work. Okay okay.” I typed in another page. “I like this mswatch. It has a place you can put in a planner medicines you take. But I like the msactivesource for information better.” I grinned. “Do you know that Montel Williams has MS? And Sue the FBI lady?” We loved watching her show. Sue Thomas FB Eye. “Really? She’s deaf and has MS?” I shook my head. “You can always find someone else worse off than you. I’m surprised at how many people have it. Squiggy even has it,” I said, mentioning a character from the 70’s that we both loved. Steve sat down next to me. “There are a lot of sites out there.” “I’ll email them to you if you’d like.” “Yeah, that’d be good.” He touched me again, squeezing my hand. He still had that haunted look in his eyes. I smiled. “What a birthday present for my 39th birthday.” My birthday was less than a month away—in May. “Don’t say that!” I’d shocked him. I chuckled. “Oh well, that’s about all I can think about right now, is the MS.” I turned back to the computer so I didn’t have to see that look, it just made me feel so guilty to see him upset and lost. “God’s in control, you know.” He hugged me from behind. “Yeah I know.” “Go finish watching TV so I can finish reading this.” He nodded. “You coming?” I waved my hand. “In a bit.” I needed the web. It was my lifeline to the disease, to finding out what it was about. I didn’t know anyone who’d had it except one lady who we’d picked up on the ambulance. I remember her being totally paralyzed, and this large machine that would lift her to our stretcher and then we had to lift her after that. She’d been a phlebotomist at one time—before. I needed to see what was going on. I hadn’t realized they had any treatment for it, when the doctor has first told me he wanted to order an MRI. I was still waiting to see a neurologist for the final diagnosis. They’d done a spinal tap, evoked potentials, an eye exam, and blood tests galore… Now I had to wait three more weeks to get into a doctor’s office. I read online that there was treatment for bad MS attacks. They’d put you on steroids. I didn’t guess this was bad, as no doctor had offered steroids for me. I found these sites useful, a godsend to me. There were four different medications and each one had a site. www.mswatch.com was for the Copaxone site. www.msactivesource.com was for Avonex. www.multiplesclerosis.com dealt with betaseron and finally www.rebif.com dealt with the newest of the four drugs. Copaxone, it said, was the only one that was not an interferon. In addition, each one was given differently. Copaxone was daily, but Avonex was weekly and intramuscular, whereas the others were only subcutaneous shots. Wow! Therefore, I took my time reading each site, reading stories, and finding out the devastation this disease had caused. And I would suggest you do the same. Forewarned is forearmed. Or something like that! Honestly, you need to know all of the treatments out there so when you go to your doctor you can make an informed decision. Some doctors prefer one medication over the other. Getting ahead of myself again here…They put me on Copaxone at my request. It was premixed and I wouldn’t have to mix containers before starting the shots. To me that was a plus, and it had the least side effects out of all the others. Of course, wouldn’t you know I’d have a horrible reaction to it—but I didn’t realize how bad it was until I told the doctor. So I ended up on rebif, which affects 97% of the people with flu like symptoms but guess what—I have no problems with it. They had suggested something else first, but I didn’t want it. Both of these medications come premixed. None of the others do. And I didn’t want to give myself a shot once a week in the hip, instead preferring the ones that go just under the skin. These are things you need to know before you go to the doctor. And they have tapes you can watch at the doctor’s office, nurses who will come out and train you on how to give these shots. And if you don’t have insurance, most of these sites tell you how you can get help with the medication if you need it. So visit these sites. I loved msactivesource even though I didn’t use their medication, because for me it was the easiest to understand when talking about how MS affected you. However, at MSwatch, they have MSUNIVERSITY that takes you step by step through virtual classes, where you read and answer questions as it explains the disease. Get this information so when you go to the doctor, you know what is going on. Fear is cast out with knowledge. The more you know about the disease, the less fear you’ll find. And the same goes with God’s word. In the last chapter we learned that God was in control, let’s talk about God casting out all fear. True love casts out all fear. God’s love in your life will get rid of the fear. Let’s talk children. Who has kids? Do you? If not, well you were a child at one time. You would protect your child from whatever you could. I remember a neighbor who used to protect her son from the teachers at school. She was so overprotective—she even protected him when he was learning lessons that she didn’t’ feel he needed to learn. It’s our love and need to protect that motivates us. Well God is the ultimate parent. He will even allow us to go through problems if it’s going to help us grow. And if we realize that, then we have nothing to fear because we know that, like a parent letting their child go as he or she learns to walk, but is right there to catch them if they fall, our heavenly father is there to protect us and catch us too. Let’s look at some verses on fear. 1. verse one 2. verse 2 3. verse 4. verse 5. verse
You’ve written down your observations on the above verses, so let’s pray.
Our precious abba, we come to you right now in awe of your power. When Moses was in trouble, through his faith in simply holding out his staff, as you had told him to do, you performed a mighty miracle. Oh heavenly Father, we ask that you do that in us, perform a mighty miracle, rain down your love on us, fill us so that your love is overflowing and we can’t find fear at all because we are so filled with you. Give us courage to stand up, look MS in the face, and laugh at it, to tell the disease that it has no power over us, that your love is all that matters. Give us the strength to face those who would pity us or act funny around us, and have us show them Your love, Abba, your absolutely unquestioning love as you teach us to follow you no matter what. Let us be like Paul, who said he would follow your path even though he knew it led to Rome and eventual death. Give us that overcoming spirit. We love you, heavenly father, Abba, father, and we follow you in grace, in strength and in courage. Amen.
Now on the following pages I want you to list some of your fears. In addition, I want you to look at them and then write down how you think God can alleviate those fears. Look at the verses above. Write out your answers. Write down how you can act, something you can do, that will help you get through that fear. It might be talking with your husband, your children, your best friend, your pastor. It might be spending more time in God’s word. Write down what has happened during the week, fears you’ve faced or your friends have faced and how they handled them. On the other hand, perhaps it’s not fear but anger. Anger is oftentimes a reaction of fear. Look into it, see what it is. Insert four blank pages here
Chapter Three
3 years later
“Honey, what’s the matter?” I glanced up from the floor, seeing my husband rushing into where I was. “I fell again.” Frustrated, I worked to push myself up. “Where’s your cane?” I sighed. “I didn’t think I needed it today.” My husband sighed. “You should keep it with you.” “I forgot!” I snapped then felt guilty. My husband just grinned. “That Swiss cheese brain of yours?” Reluctantly I grinned. “Yeah. I guess it slipped through one of those MS holes in my brain.” He laughed. “Christina’s at work and Jeremiah’s at college. At least you were home to see my latest humiliation,” I quipped. “Well I had an appointment and got off early.” He pushed the walker over to me. “Use this until I find your cane.” “Thanks.” I grabbed hold of the walker. “I didn’t realize I had done so much yesterday.” “You’re always doing too much.” I scowled, which is what he was looking for—then I grinned. “Why slow down and let the devil win?” He sighed dramatically and in a chiding voice, walking back with my cane, said, “You could stop giving me heart attacks.” I waved off the cane. “My balance is much better with this.” And it was. I walked three times faster with the walker than the cane. And if I felt my legs suddenly giving out, I could lean on it until they regained their strength. “I swear Wednesday night when I’m working with those girls, I’m going to take this. I am absolutely exhausted by the time church is over.” “Promise you’ll rest this Thursday.” I groaned. “I always do—usually.” I got back over to the sofa and collapsed, grabbing my computer. Putting my feet up I set the laptop on my legs and frowned. “You know the worst thing about this disease is?” “What’s that?” Steve went into the kitchen and brought me back a glass of ice water. I took it. “It’s not being able to do anything Monday or Thursday or Wednesday afternoon if I want to function Sunday and Wednesday.” Steve’s eyes softened. I waved his look off. “Aw, I’m fine. I’m still kicking the devil. He isn’t going to win. Speaking of, we need to feed those chickens today.” He chuckled. “Christina will when she gets home.” My frown came back. “I really don’t think Christian or Jeremiah realize I’m really ill. I think they think that I’m just being lazy. I sometimes feel that way. It’s not my fault the disease progressed rapidly in me.” Steve heard the oh poor me and smiled. I growled. “Oh stop it. Okay, sometimes maybe I am lazy.” His smile disappeared. “You aren’t.” I chuckled. “Who knows? If I could exercise more maybe I wouldn’t be.” “That last attack took it out of you.” “Yeah and try explaining that to friends who seem to think if I’m walking, I’m okay.” “I know I know.” Steve sat down and picked up the remote. Life went on. “Don’t turn that TV on! It’s not 4 pm yet.” “But—but I never get to watch TV,” he said in that kid’s voice. I growled gain. You would think life would change after a disease. But it didn’t. Steve still had to have his TV any free moment he got. “Put it down….” “But-but—“ I gave him that threatening look and he dropped the remote. “You are so bad,” I said and chuckled. He started to get up and noticed I actually had my word processing program opened instead of a game. “What are you working on?” he asked coming over to see. “I’m going to write about MS.” “Oh?” I grinned. “A Christian’s account. Right now I’m working on what the symptoms are.” He sat down. “I can help you with that.” “Oh yeah?” I arched and eyebrow and looked askance at him, daring him to go on. He grinned. It was hard to believe we’d been married almost twenty-five years. We still goofed off and joked around like a young married couple. He didn’t take the bait. Instead, he launched into the symptoms. “Optic neuritis.” Of course, my first symptom that had scared him so much. “I remember you lost your 3-D perception. Remember how you kept looking down and nearly falling because you thought the ground was closer than it was so you’d step wrong.” “Yeah. However, more than that was the pain I remember. My eye,” I reached up and touched my left eye—I’d had three attacks since that first time and all in the same year. The muscles around the eye hurt. If I tried to look left or right, or tried to read, my eye would just hurt. It felt better closed, not looking at anything.” He touched me again. I had come to realize that was his way of fixing things. Men felt they had to fix problems. And since he couldn’t fix this problem for me, he fixed it by comforting me. I smiled. “Remember losing the strength in your arms?” “Oh yeah.” I’d almost forgotten that one. “That’s right. I couldn’t even reach inside my purse without my arms burning like I was lifting a hundred pound weight.” “You told me most people didn’t have problems in their arms.” “But I’m not—“ “—Most people,” he finished. And I laughed. “Yeah, most people have reactions to Rebif. I have no problems at all.” “You sure did with your arms.” “Yeah.” “And the cognitive problems,” he continued. Funny how many medical terms my non-medical husband had picked up. “When you were having that exacerbation and couldn’t remember any words for common objects.” I made a face at him for the way he worded that. “Just because I couldn’t remember the word plate or dishwasher.” “Christina calls that your pronoun phase.” I laughed. “That’s mean.” “But true.” He hugged me. “Yeah can you take this and put this in that thing over there.” “Okay okay. That’s the Swiss cheese brain again. At least I haven’t become incontinent.” I looked up at him. “Would you change the sheets if I had an accident?” He grinned. “I’d hold the pillows for you.” “Oh get out of here.” “Wait!” He stopped me from pushing him off the couch. “The latest attack. Your attacks always start with burning and spread.” “Yeah and it spread all the way down into my left leg from my side.” “You have all that tensing of your muscles now. But I think your fatigue is worse.” I nodded. “Thank goodness for baclafen and provigil.” “You couldn’t keep your eyes open or even walk before those two medications. “ I smiled. “But God—“ “—Is in control,” he finished. “And I’m not going to give up. He promised me healing when Jesus took those stripes and I am going to believe and stand on that.” “Good for you,” Steve said and hugged me again, that love shining in his eyes, the love, I’d come to see, as so much like what God held for me—unconditional. It’d taken me a long time to accept that it wasn’t my fault my family was going through this. For some reason I’d blamed myself for all the symptoms. My disease had been fast and furious. Not only could I not handle heat, but I couldn’t handle cold. My legs and feet would twist up until I was crying out in pain. My daughter was always getting me blankets if I was sitting around barefoot. My husband was always poking medicine down me, making sure I didn’t forget—and my son—ah he was something else. He was the most sensitive of all. I really worried how all of this had affected him. My first symptoms with the eye and my legs, he dropped doors and let them close on me, to prove to himself I was okay. He and his sister both got angry with me one day at church and left me there, each thinking the other one was on their way to get me. A friend took me home at eight that night because my husband was working overtime. And my poor son had been angry at himself, upset, and staring at me like a deer caught in headlights all the next day. I’d seen fear in him. I let it go. He might not act like it bothered him, but it was those things that he did, purposely trying to act as if nothing had changed, that clued me in how much it bothered him. My daughter, for the first year tried to clean the house constantly while my husband hovered anytime I said ow. It took three years for those two to calm down and start acting normal again. Too normal sometimes, so much so that they forget that there are days I’m in constant pain. Even when I’m up leading music on Wednesday night with the kids, I can be in a lot of pain, one of the symptoms of MS. Or like last week, I was so tired that I told the forty or fifty children that we were going to sing sitting that night because my legs were just too tired to stand. Half sat, half stood—but we were still able to worship God. Somewhere along the way, my husband had become a partner in the disease. No longer did I feel sorry for him, but I accepted that this disease had affected him just as it had me. The first year it was harder on them than me. Now it was harder on me than them. My son got really mad one day and said I’ve told you that five times, mom. It’s not like you have a reason to forget it. I turned to him and said, except for the MS! It’s frustrating when you have to have someone repeat things because you just keep forgetting what was said. I have to force myself to stop what I ma doing and stare directly at my son or daughter or whoever when they are talking or I forget, or simply don’t register what they are saying. That’s one of the big problems with me. And the fatigue. Before I went on baclefan I couldn’t walk across the living room without my stomach or sides cramping. Nor could I make it without falling into the nearest chair and taking a short nap. Provigil gave me anew lease on life—giving me enough energy so that I can do some stuff and be awake and alert so that I can pay attention to what’s going on. There are so many symptoms. Another writer friend of mine has MS. She doesn’t have many problems at all. Instead of traditional medicine she’s tried a special diet that she feels helps her. I don’t go that way because I was once medical and believe that doctors are doing their best to help—even if pharmaceuticals are making a killing off medications. And I keep updated on what is going on. I write down all of my symptoms to track any progression. I learn my limits and I have to learn to deal with frustration. Patience is a virtue possess it if you can….That old poem rings in my head some days. Of course I changed the end that says it’s women who don’t have it to men. I refuse to admit that I have a problem with patience. But this is one thing the disease will teach you. You aren’t ‘normal’ anymore. Some people get this disease and have a relapse only occasionally. Relapsing remitting is the most common form. And though MS is 2 to 1 in women versus men, when men develop MS, it is usually the worst type of Primary Progressive. That type of disease simply starts and progresses, with no stopping of symptoms. There is also secondary progressive, which many with relapsing remitting eventually go into. That is where there is a steady, though slow, progression of the disease as well as times that you relapse. They have recently talked about a new type too, that is a form of the primary progressive. But really, the two terms, relapsing remitting and primary progressive is all you really need to know about. I have not been normal in the progression. They say the first five years will tell you had bad the disease is. Well, I’ve had it three years and there are days I use a walker. The last attack I now fall three or four times a week. I am absolutely amazed sometimes at how fast, in me, this disease has progressed. And there are days I’m frustrated too, frustrated, because God has called me to do a job and this disease gets in the way. Then, I have to stop and remember the golden rule: God is in control. You need to make that your mantra. Why? Because, you never know when this disease is going to attack. How hard, how fast. You may go 18 months fine and then wake up one morning with your side burning, or your leg cramping up, or suddenly not able to remember that the thing you put leftovers in is called a refrigerator. But you can comfort yourself with the knowledge, that if you go on steroids, stop that attack as soon as it starts, that most of the damage is only temporary and you’ll get back a lot of what you’ve lost! And you can comfort yourself with these words too: In a moment, in the twinkling of an eye, those who are dead in Christ will rise…..VERSE. Comfort one another with these words. Just as the symptoms are usually temporary, this world is temporary too. Our eternal life started the day we asked Jesus into our hearts. We are living an eternal life in Jesus Christ now. When we shed this body, those temporary problems are going to be gone. Our life is only a flash in pan. Our main purpose for being created was to fellowship with God. So honestly, if you can’t reach that dust bunny up in the corner of your room, is it that big a deal? Not really. There are ways around that. It’s time for the kids to grow up. Let them help. You’re doing them a favor by allowing them to learn responsibility. Just love them as they do their work and it’ll be okay. Teach those kids how to dust. Allow your husband to rotate days with you on cooking. Use your crock-pot! Take a break. Life isn’t going to end if you don’t’ get dinner made on time because you simply are too tired to do it. I know we’re taught as women that we must do certain things. And men are taught they must make the living or they’re worthless. You know what. Making a living is important. Having a clean house is important. But it’s not as important as your first duty—which is training your kids up in God’s ways. And that comes from talking with them, spending time with them. So use your disability as a time to play a game with him around the table, or have them sit and read portions of the Bible to you and discuss it. There are so many other things that can be done if you can’t do the house work or go out to make a living. You can make an eternal living at teaching those kids about eternity. Or being there for your spouse when he or she has had a hard day. Find an outlet for your frustration. Hire a maid to come in once a week to dust. Get someone from church to come over and dust—one of the teenagers—and pay them what you can. Ask the pastor. He’ll know someone who can do it. IF they’re not supportive, then ask yourself if you’re going to the right church. Let’s talk about frustration. How many of you have experienced that? Okay, I know you have. We’re all so busy in today’s world that we just have to have time to ourselves to do one more thing. But with these symptoms, especially fatigue, which is the number one crippler of this disease, we sometimes just can’t do it. Can we? Frustration is simply not trusting God. He will give you the energy you need to get the job done. If you’ve run out of energy, you need to evaluate what you’re doing and decide what can go. Let’s look at some Bible verses now. 1. verse 2. verse 3. verse 4. berse 5. verse Now that you’ve read these and commented on what each verse means to you, let’s pray. Before we do, I want to mention why I’ve chosen the word ‘Abba’ to use in these prayers. We’re vulnerable. If you’re reading this book, then you are feeling vulnerable, afraid, angry, frustrated, upset. And you need someone special who can wrap their arms around you and just hold you. Abba actually translates to mean daddy. I don’t like using the word daddy, because to me, my heavenly father is so much more. He’s Lord, He’s God of all Creation, he’s my heavenly father, and he’s my special daddy who loves me more than anyone. So, I use Abba meaning my special father who loves me so much that he’ll let me crawl up in his lap and just cry my eyes out and he’ll hold me and stroke my back and tell me it’s okay the entire time and then help me when I’m done crying. So when we pray, I want you to think about that and see your father in heaven as the one who loves you and cares so much for you. Heavenly father, we come to you now, crying out in our frustrating. We have so many things we want to do, Abba, so many things we think have to get done. But you see what we’re going through. These symptoms. They scare us, the stop us, the make us slow down, they steal from us. We want our life back, but only to serve you. Teach us, Abba, how to let go of the frustration, how to separate these symptoms out and see how they can be used to benefit us. Help us to learn from these symptoms just what really is important to you and what’s not important. Help us to use these symptoms to better organize our time where you are first, heavenly father. We love you, Abba, and thank you for your love. We stand on your word that you have given us a sound mind and that we are running the race for you. We refuse to allow the enemy any ground in our life, dedicating our life to you, our time to you, our joy to you, throwing out the frustration and instead praising you at every turn. Thank you, for loving us. In Jesus’ name Amen.
Okay, I want you to look back over these past few weeks, or even today. Write out things that have really frustrated you. Perhaps new symptoms? Or lack of information? Lack of understanding from someone? So many little things can really build up and cause us great frustration. Write this down. Then, look at them, examine them, and one by one, write down why it frustrated you, and why you allowed it to frustrate you. Then write down how you think Jesus would have handled that situation. Ask yourself what you can do to change that situation, if it’s a reoccurring one, to benefit your relationship with your family, with God, with your church. Then I want you write down the five most important things in your life. Ask yourself why those are important. Then put them in order of importance. Put down the five least important tings in your life that you can get rid of, these are some of the things that are probably causing your frustration. Then put these up on your fridge. And tell your family those are going the way of the circular file. If it’s chores you can’t do, have a family meeting and tell the kids you need help. Discuss what can be done. Then I want you to write up your new routine after it all. We’ll then see those frustrations, one by one, slowly melt away, just as many of these temporary symptoms will disappear in the coming months.
Chapter Four
My husband and I encounter the doctor and he talks about the tests. I go to a different doctor after this one freaks me out and we talk about the actual diagnosis, which the first doctor didn’t do. IT’s important to know what tests you take. Confusion.
Chapter Five Telling My Family Sitting down and telling my family was hard. Having to share with them what might or might not happen. Their reactions were different. Just as our symptoms and reactions are always different. We need to accept change. Change isn’t always bad and we can find good things in change.
Chapter Six My husband and I going to support groups and my husband seeing what MS was really like. Reality check. From mild to severe. Lentgh of time had no affect on how severe it was. The Unknown Factor.
Chapter Seven I love heat. I hated the cold and being up north. But I discovered that heat could affect me. And in odd ways. It makes symptoms worse. My husband learned to notice it before me. Listening to your body. Listening To God.
Chapter Eight The promises of God. God promised me healing. When you are promised something, you need to hold onto that. God’s book of promises.
Chapter Nine My husband takes a layoff package—we’re in God’s will, but the stress of not trusting God brings on an attack. Handling Stress in our everyday lives with this disease.
Chapter 10 Exhaustion, the number one symptom of MS. Learning to live again. How do deal with exhaustion and how to start a life totally alien to what you’ve always lived. Our eternal life with Christ—an alien life.
Chapter 11 Finding a new doctor is almost as bad as huntring for a husband—you hve to find someone you can trust. My husband had to help me too. Your relationship is a lasting relationship, just like our relationship with God is lasting, good times or bad times.
Chapter 12 Volunteering in church, the people discovering you are ‘handicapped’. How do you handle this? Thinking on your feet when people question you. Being a witness for Christ.
Chapter 13 My latest attack takes my legs and stability. How can I deal with that. How can my family deal with that. They’re strong! Learning to allow your fellow church members to help and to love you in their own way.
Chapter 14 The disease is unpredictable and my husband and I find out just how much after three years. How do we deal with those that say, but you said God promised you healing? What you see is not necessarily what you’re getting. Standing in faith despite what is happening around you.
Chapter 15 Wrapping it up. Despite a diagnosis, despite all of the symptoms, there is always that one thing to remember: God is in control. You can see God in the good times and the bad times. Paul in prison didn’t moan and complain. He saw it as opportunity. This disease, while we have it, is an opportunity to be a witness for him. Taking it out to a hurting world. Healing and eternal life are coming.
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