It's like a party everyday!

So I think I may have taken the 'put a positive spin on things' thing a little too far. I'm one of those look on the sunny side of life, make lemon-aid, play the Pollyanna glad game people. I like to stay positive and it makes me sad to see people spend too much time languishing in their misfortune. There is a lot of great stuff about being alive, and yes there is bad stuff too, but that's part of the package. Besides, if life were always perfect, would we really appreciate it? Probably not. We might at first, and then we would slowly let that slip away until we took it all for granted. I'm not saying don't acknowledge the dark parts of life: quite the opposite. We should fully look them in the face and name them for exactly what they are. But if we don't move on, then they win. And we lose.

Now I'll hop back down off my shaky wooden soap box and get back to the original topic. It has recently come to my attention that several members of my family and a handful of friends think MS must be like going to Disneyland every day. Yes, this multitude of smarty-pants people in my life are now saying they want to have MS too, based on my glowing reports of life from the myelin side. Even going to Disneyland would be better with MS! The reasoning behind this sudden desire to be just like me has nothing to do with my stunning good looks or my witty and brilliant personality (shocking, I know!). No, it's because I keep telling them about all the positive things and glossing over the negatives.

I may have mentioned that the MS society throws parties and events, and I may have said something about getting financial assistance for family vacations or exercise classes through their wellness grants. I probably brought up all the free pens, notebooks, and tote bags that the various drug companies give out. And based on my love of cheese and cookies, I am positive that I told more than one person about how good the refreshments were at the recent MS 101 event I attended. Of course, when I found out that people with wheelchairs get to cut to the front of the line at Disneyland, I proclaimed the fact to everyone in the room! Who wouldn't?!!

So now that I have spilled the beans about some of the super-nifty-cool things that go along with having MS, I am paying the price. I keep getting pestered with 'how can I get MS?' and 'I wish I had MS!' and 'What is the wing speed velocity of an African swallow?.' It's enough to drive one into a flair-up!

So now that all of you know how many great perks there are to having MS, I beg you to stop pestering me with questions to which I will only make up the answers, and to go do something useful instead. Like sending me cheese and cookies.

I have MS

I have MS. I have fatigue so extreme I cannot wake up some days. Instead I lie in my bed in the middle of the living room and sleep while three children jump on the bed all around me and get into things that they shouldn’t. I have ataxia or loss of muscle control and mobility problems. I fall over for no apparent reason. I am just standing still and then I am not. I am tipping, falling, racing toward the floor before I know what I am doing. I cannot predict it. I cannot stop it. I have tremors. I look like a person with Parkinson’s at times and I am embarrassed. I cannot type this page without constantly erasing the extra letters my betraying fingers keep adding to the page. I have pain and muscle stiffness that won’t let up. No pills or shots or infusions have made it go away. I can’t tell if it will come on me when I wake or when I turn my head or when I sigh. It comes when I least expect it, when I least want it, when I can least cope. I have lost sensation from the chest down. I cannot feel my feet at times. I can’t tell if my husband has his hand on the small of my back or if my children pinch my leg on certain days. I have blurred vision some days. I see clearly and then I blink and I don’t. Everything is a cottony surreal dream world where I can’t read the street signs or see what the faces are trying to tell me. I have bladder problems. I must always know where the bathroom is in case I just can’t wait anymore. I feel that I have to go all the time. I am worse than my children when I need to go, I need to go now. There is no waiting. I have loss of cognitive function. There are days where I cannot remember what name goes to what person, son or daughter. I forget the words door, stove, and, blue, diaper, food, car, and too many others that I can no longer recall at all to remember that I forgot them. The same words or phrases get stuck on a loop grinding through my head like a slightly hysterical broken record. Not smart things, but nonsense things. Things like my 2 year olds word for Popsicle, pocasul, or broken bits of songs or halves of words that make no sense. I have a cane. Actually, I have seven canes, the start of a collection. I have MS and it has hurt me in more ways than I can clearly articulate now, maybe ever.

I have MS. I have the blessing of knowing that I am not crazy. My symptoms are real and have an explanation. I have the blessing of three children who are smart and compassionate and caring. They care for me in their childish ways when I cannot care for them, and it blesses me beyond measure. I have been blessed with a loving, compassionate, gracious husband who can understand me. He has lived a life filled with many of the experiences I am now having, and so he can empathize like no one else. He balances everything so carefully to care for us and it is a blessing to all of us. I have the blessing of a loving family. I have parents who drop everything if I need them to lend a helping hand when I am unable to help myself. I have in-laws that are caring and generous and always lend help when it’s needed. I have relatives on all sides of the family tree that pray and think and ask about me, and they bless me by that. I have friends all around me, at the church, in the neighborhood, around the world. They pull apart my needs and pass them around and bring them back to me cared for. They don’t let me make excuses, and that is such a blessing. I have a house and a car and things galore that I find comfort in and because of that, they are a blessing to me too. I have community. There are people that have joined together around us, physically and emotionally, and they form a network, a community of support and love and blessing. I have faith. I see from past experience that even in dark and seemingly pointless things, there can be blessings. Good can come from bad. Purpose from loss. Meaning from what seems meaningless. I have been blessed to see this in my life repeatedly. And I have faith that I will be blessed to witness it yet again. I have creativity and intelligence. I have ideas and the determination and ability to see them to glorious fruition. I have the support of my friends and family to see things through. I have comfort. I see God in my life, and I feel his arms around me on the days and in the moments when I cannot stand on my own two feet, even with my cane. On the days where I only need Him to hold my hand, I feel Him next to me, encouraging me on.

I have MS. My life sucks. But only if I dwell on the first set of things that I have. Not if I think on the important things that I have.

Quick Update

So if it feels like a relapse, sounds like a relapse, and looks like a relapse... is it a relapse???

The fun part about MS is just how unpredictable it is. It's like one of those neat carnival games where sometimes you win the giant panda, and sometimes you lose all your marbles, I mean quarters, trying to win a prize, any prize at all.

Yeah, actually that's not so fun.

I am sort of dealing with this a little better now. It is such a roller coaster ride to go through all the stages of grief every couple of months with each new flair-up. There's nothing quite like being physically AND emotionally drained at the same time.

I totally lost it today on the way to the hospital for my daily steroid infusion (not to be confused with the new booster at Jamba Juice...). I got pulled over for a speeding violation, couldn't find my current insurance card, and when the cop incredulously asked me why I hadn't see him back there the whole mile and a half he'd been following me, well, the waterworks started.

He still gave me two tickets totaling $700.00! but he did soften up a bit to carefully explain how I could get most of it dropped. I was just praying he wouldn't tell me to get out of the car. With my staggering, gimpy walk, I'd probably have been arrested for drunk driving! Thank God for small mercies!

So hopefully these steroid treatments will kick in sometime soon, and I'll start moving a little better. At the rate I'm going, I'm going to need a pony and cart to get me around. Yay, though, because I've always wanted a pony!

Another Relapse?

So here I am after a week of feeling relatively back to normal, and I am starting the cycle all over again. I have spent the last four months feeling exhausted, gimpy and forgetful, not to mention frustrated and pissed off about it. Then I had a couple of weeks of feeling a little better each day and then, ta-da! A week of normal! I was actually starting to think about running again.

But then, two nights ago, I started having horrible vertigo. The next morning, I noticed I was fixating on the word pockasul. Ok, not really a real word, but Tater Tot's version of popcicle. I was chanting it over and over in my head. And I am running into things again, staggering a bit as I walk. My legs feel like they are getting heavy again.

And I am afraid.

If symptoms last more than 24 hours, they start calling it a relapse or a flair, or whatever shiny word you want to name it. Maybe it's just a fluke and I'll wake up in the morning and feel like bungy-jumping or training for a triathlon.

Or, maybe I'll wake up in the morning and not get out of bed. Maybe I'll forget what I am supposed to be doing, and maybe I'll start getting bruises from running into walls and furniture again. Maybe I'll pull my cane out of the corner and my handicap placard out of the glove box and put them on the front lines again.

As my dad always joked, I'm sick and tired of being sick and tired. I know in my head that God is faithful, but my heart despairs. How often can I do this? What if it never stops, and just goes faster and faster until it's all I remember?

If this is truly turning into a flair, I will take time and adjust. As always. But until I do make that adjustment, until I am fine, I am not.

Look out SOY! Here we come!

So Miss Tater FINALLY outgrew an allergy!!! She passed her soy challenge today with flying colors. The doctor signed her off even after Tater Tot shushed her while she was talking so that her baby dolls could take their nap. So tomorrow will be a day of Soy Celebration! That almost sounds like an official holiday! Happy Soy Day to you! We will be have soy cereal, soy milk, soygurt (I have no idea if there is any such thing, but it sounds like a good name for a soy yogurt), soy ice cream, soy beans, soy cheese and anything else soy we can buy at Fred Meyer... We are going to be some wild and crazy girls!

A little free time on my hands...

So I have finally been forced to lighten up a bit. I have always been a 'doer', and it has finally caught up with me. I went off on a wonderful, relaxing vacation to a wonderful, relaxing resort in the Mexican Riviera, and I came back still tired. I feel a whole new level of affinity for the person who penned the phrase 'I'm sick and tired of being sick and tired'.

My vacation was even better than I could have hoped. The weather was hot and sunny and beautiful, and the water in both the pool and the ocean was warm, and the company was great. I even discovered that my shots don't give me injection site reactions in that climate, so I am now trying to talk The Doctor into letting us move down there... No luck so far. Anyway, my point is that I came away with a few conclusions.

First, I really do think that I need to take a vacation every six months or less. Less, actually. I think that I appreciate my life more, i.e. kids, responsibilities, bills, jobs, etc. when I am away from them for a bit. Unfortunately, I may have reached my vacation quota for the next few years. My family's generosity is, well, generous, but it does only go so far.

Secondly, I need to slow myself down so that I actually have time and energy for the things that I say are a priority for me. For example, my kiddos. If I am always wearing myself out doing all sorts of things I feel obligated to do, but that my heart just isn't in, then I have nothing left over for my little superheros. They need me, and if I am unable to be 100% at the moment, then whatever percentage I am needs to be invested in The Doctor and the gang.

Thirdly, (see how organized and thought-out all this is!) I have a real business opportunity in front of me. I have been granted a creative mind and have done very little with it in the last couple of years, and it is ready for something to do. I think God plants ideas in our minds and then encourages us to make something of them. I think this is one of those times, and now I need to figure out what I am going to do about it. Do I trust in God's word and take the leap to see this particular idea through, or am I going to hem and haw (like I usually do) and miss out on valuable learning and growth experiences? Oh yeah, and the potential blessings we get when we follow God's leading. It's funny how when I write it like that it seems like such an obvious choice, but when I am left alone to act on it... I also feel an affinity with whoever wrote, 'it's one thing to talk about it, and a whole 'nother hill o'beans to do it!' (Don't ask me where I heard that, it may have been one of the voices in my head.)

Lastly, and in conclusion, and to sum up and all that. I actually have nothing else to say at this point, but it just felt like I should wrap up somehow, seeing as I had all sorts of paragraphs that began with words ending in -ly. I guess I could make another plug for vacationing every six months, but that would probably just be overkill.

I FINALLY logged back on!!!

So, let's see. It's been how many months!? I just decided to start another blog (www.southernhemisphereofthebrain.blogspot.com)
(I know, long title...) and when I went to log back in to that one, it popped up with this one as well! And after all this time when I had given up hope of EVER figuring out how to get back into it.

Well, no guarantees (as you should know by now), but I am going to start this blog back up as well. My kiddos are so cute and precocious that I need to have an outlet for it. Now if I could just have an outlet when they are bouncing off the walls and making me wonky...

Ms. Gimp

The loss of my mobility is a staggering blow to my psyche. I am a go-getter, a doer. I do not sit still and wait for life to happen; I make my life happen. To wake up one morning and have the ability to move as I like suddenly be missing is a serious obstacle to my determination to be stoic. I cannot cope with it. I have tried to make myself walk normally and it doesn’t happen. In the past, I was always a mind over matter kind of girl. Where there’s a will there’s a way, and all that. These days, I’m lucky if I can remember what a will is.

I never realized how my concept of self was tied up in my mobility. I am not entirely sure exactly what the hang-up is for me. Is it looking like a cripple? Is it not being able to be as limber and agile? Is it that I can’t keep up with my family anymore? I imagine it has something to do with all of the above.

Healing and Suffering

I have been thinking a lot lately about the role that suffering plays in my life. As I look back over the last ten years and more, I see a definite pattern. I see seasons of pain and suffering interspersed with seasons of calm and quiet. Hand in hand with that, I see seasons of growth and seasons of rest. The times of growth directly correlate with the times of pain and suffering. I am often reminded of the song refiner’s fire. It really strikes a chord in my heart. My heart’s one desire IS to be close to you, Lord. With out those times of heartache and trial, I don’t know that I would have that closeness that I so often find myself looking for.

I find that when I am living in a season of rest, I become complacent. I have no driving urge to seek God’s company. I have nothing (or very little) to push me to seek him and to rely on His strength to sustain me. Why should I? In those times, my life is at peace. Why put in the extra work if things are comfortably gliding along? Until fairly recently, it has only been during the times of crisis that I have felt God, heard God, and reached out my hand to Him. All other times, I have let Him fade into the background of my consciousness while I live my life on my terms. It’s as though he is my secret weapon to be pulled out in case of emergency.

As I reflect on these patterns, I feel a certain sense of guilt. I don’t think this is how a relationship is supposed to work. I have been in these sorts of one-sided deals and they breed nothing but frustration, anger and resentment. I know this and yet I live this way. It’s as though I cannot reconcile my emotional and my intellectual selves.

Anyway, back to my main point. I look back and I recognize that I have been given a gift in my sufferings. I can look back at each of those moments and see multiple blessings that came out of them. Things that I never in my wildest dreams would have considered to be a byproduct of some of my experiences, and yet God brought those blessings out of those moments. My point is that without that suffering, I would very likely have missed out on those blessings. I am not saying that we should seek out trouble or that God only blesses us through our problems. But I do believe that God allows life to function.

Healing can come in many forms and to expect it to take a shape that we have conjured up is to deny the sovereignty of God. Perhaps healing for me will be emotional – I will learn to live my life in the way that God wishes for me to. Maybe it will be a healing of my mind – I have already spent more time in reflection and in writing than I have in the last several years combined. I know that God has this plan for me and yet I repeatedly struggle to embrace it. Perhaps this healing that everyone is praying for and talking about is not my healing, but a healing of others that God can bring about through me.

Should I pray for the removal of a burden?

What if the burden is something I can live with? Should I always automatically pray for it to be removed? What if I feel that this is part of God’s plan for my life? A part of me doesn’t want to be healed. I think it may be because I feel closer to God this way; I know I HAVE to rely on him more when I am burdened. Perhaps it has something to do with my being in crisis mode for the last ten years.

Why AM I struggling to pray for healing? Why do I hesitate to pray the God’s will be done, knowing that it may lead to healing?

So I have thought about this for several days now, and The Doctor had a very good insight when I broached the subject with him. I like to be in control. I am a doer and I like to know what is happening so that I can control the situation. I think that is why I am so good in crisis situations; why I keep a level head and calm demeanor. If I flip out, I lose that so very important control.

The Doctor’s thought was that if I start letting people pray for me, lay hands on me, etc. then it is one more way for me to feel out of control. See, I would like to think that it is more along the lines of my first thought. I am so in tune to feeling God’s presence in times of trouble that I can thank him for giving me trials. See how holy and godly I am? Unfortunately, one of the things I have recently been gifted with is a clearer vision of self. I think, no, I know that Jeremy is on to something.

In past situations, I have still maintained some semblance of control, albeit a small portion. Tater Tot’s allergies – I can change my diet to accommodate her needs. Big Guy’s Asperger’s – I can read books, join an online support group, find therapists to work with him. Doodle Bug’s sensory seeking behaviors – I can wear padded pants or decide to live with bruises, and I can build him an indoor playground. Life with The Doctor – I can even maintain some control there. Admittedly, it is much harder, and definitely more complicated than it is with the kids. But with this, the MS, I am losing control. Maybe for the first time in my life. Why is that so hard for me?

I find that I am scared to let go and allow others to actively pray for me. I feel it is one thing for anonymous people to offer up anonymous prayers on my behalf, but quite another to have people you know and have relationships with surround you and demand that God heal you. The quiet part of me feels like they are trying to steal something from me. How dare they do this!? It feels like an invasion of sorts. A friendly, well-intentioned stripping of part of who I am or what it is that I am made of. You see, at the moment I am more relieved than anything to be diagnosed with MS. I have lived this way for ten or twelve years. I have had worsening symptoms for almost two years now. I have cried over these confusing and infuriating ‘minor’ problems that add up to a poorly and barely functioning me. I have questioned whether or not I was losing my mind or imagining symptoms and over-exaggerating. I have spent the last several years increasingly fretting about what was wrong with me.

While I swing back and forth between relief and fear, I find that I have been spending the majority of my time on the former. To finally understand that I am OK! There is a reason for the way I am. I am not simply weak or exaggerating or losing my mind. I do not have Alzheimer’s. I do not have some new, unheard of type of bone cancer. I am not overly stressed, tired, or malnourished. My thyroid and iron levels, and all my other levels are fine. I just have multiple sclerosis. To me, at this point, that it such a comforting thing to wrap my mind around. And to have those who care about me want to take it away makes no sense to my lesion ridden brain.

One of the most difficult things for me to read about MS is that the only predictable thing about the disease is its unpredictability. That and the statistics about the decline people who have had the disease for a while seem to go through. I am starting to understand that with this particular journey there will be little that I will be able to keep under my control. On one hand is the disease whose only defining trait is its inability to be securely controlled. On the other hand, people who love me and care for me are asking me to trust that God will heal me.

Both directions are fearful to me. The MS for obvious reasons. Trusting God and the prayers of those around me is a little more difficult to understand. The Doctor’s thoughts on my desire to maintain some control though opened me up to a new train of thought. I can’t control God. I have learned that lesson very intimately several times over the last few seasons of my life. Any time I have challenged God to anything, I have come out the sorry loser, bearing scars from the encounter. I know what happens when you open yourself up to letting God do anything he wants with your life. While I firmly believe in refining through fire and that which doesn’t kill us makes us stronger, etc. I also don’t jump at the chance to turn my life upside-down as I have in the past.

The last time I prayed, demanding things of God, I asked that He let me prove that I trusted him. He definitely gave me that opportunity, and I still struggle with the wounds. I naïvely challenged Him, and the funny thing about God is that He will take you up on that sort of thing. So you’d think by now, I would have a better grasp on the idea that I am not at all in control. I have had that truth thrust in my face time and again. Yet I still trip over the concept. As with all the other truths I keep discovering, I seem unable to cement them into myself. I seem to constantly take three steps back to ever two forward. Is this a part of my forgetfulness? My lesions making my memory blurry so that I cannot remember lessons learned?

I fear not. I suspect this is all just a part of my humanness. I know that after a point, it is just an illusion that I am maintaining control. Life is too complex and multifaceted for me to be able to control it.