Over the last 14 years my multiple sclerosis has changed course from relapsing/remitting to secondary progressive.  This makes it hard to say how it has changed day to day, but I can look back over the last year and see how things have progressed.  Last year I was able to walk the half a mile to the grocery store and home again with forty pounds of groceries on my back.  Now I cannot imagine walking all the way down the block.  

This does not bother me as much as some might think.  I just see it as the way things are.  I accepted long ago that this was my lot and that’s just how it is.

This leads me to why the scooter I recently received is such an unexpectedly awesome gift.  While I had accepted that I was less moblie, I had no clue just how much it had negatively impacted my little family.  It turns out that if Mama’s not walking, nobody’s walking.  My children have missed out on those exciting walks to the store filled with adventure.  We had stopped going ANYWHERE at all, in fact.  When we did go out, I would put an end to all the fun about thirty minutes in because I needed to sit.  

Since receiving this scooter, our lives have changed dramatically for the better.  We now take nightly strolls as a family again. I can make it to the store and back with no problem and I even have a cute basket to put my groceries in.  Eric and I used to love to go window shopping and this activity has been returned.  I would wager that I have put at least 5 miles on this thing in the first week alone.  The kids are so happy to be back to walking and getting to enjoy the dedicated alone time with Eric and I.

An unexpected side effect of having the scooter is that I have more energy at home than before.  Would you believe that I cleaned out my closet AND my refrigerator in the SAME day?  I feel as though I have been given a whole new way to function and there are no words I can find to express my undying gratitude.

Last Friday Sarah called and asked me if the kids and I would like to join her for play group at the park.  She calls me almost every Friday and invites me and my knee jerk reaction almost every Friday is “No”.  This time my answer was, “No… wait…would you mind if I took my scooter?”  This particular play group boasts a few members who own their own photography business.  One thing led to another and I can now offer, for your entertainment and especially that of my scooter gifter, some pictures of me enjoying the day.  

All pictures are courtesy of Nicole at with Cutie Pie Photography.

The mink was a Christmas gift from my dear mother-in-law. I feel like the scooter neutralizes the mink and lessens the odds that I’ll be doused in paint by a Peta member. Who’s going to dump paint on a lady on a scooter? That’s just poor taste.
To whomever it was that listened to the Spirit telling them to send a scooter my way: Thank you from me, my family, and all my friends who enjoy my company. May God bless you richly as He has me.

About two months ago I started to experience the symptoms of a Multiple Sclerosis relapse.  I kept thinking that it would subside soon enough and I could get back to my regular self.

It just hasn’t happened and I want to share with you some of my thoughts about that.

I have known for as long as I’ve known about the MS that it could get worse.  I would be lying if I told you that I am one hundred percent at peace with that reality.

After many years of walking unaided, I recently took advantage of Wal-Mart’s courtesy scooter.  It was a really big deal to me.  I have always figured that such a thing was akin to giving up hope of returning to normal.

Since then, I have given up walking outside my home, except when necessary.  I see the benefit that it is to my family that I save energy.  I am still able  to prepare meals, clean my home, school the children, and be available to Eric.

Suddenly, not walking makes sense.

Can I be honest and tell you that I HATE that it makes sense?  I hate that it makes sense that I should have special parking and fat handled toothbrushes and low heeled, sensible shoes and plastic cups.  I hate that I have now fantasized about getting my own scooter.

There are a lot of reasons that I wanted to be so honest about how I feel about this.  I have a good attitude because I have responsibilities that require me to.  But sometimes people mistake a good attitude for feeling good and happy with circumstances.  I do not feel good and I am not happy with my circumstances.

I wanted you to know because this spell has affected my ability to write freely without a lot of effort.  My thoughts are jumbled and it is hard to get them out in a way that doesn’t leave me hitting “backspace” or “select all” and “delete”.  I have decided that I should make my blogging absence official.

I figure I’ll post some of my archives on occasion and still pop in here and there, but I think it is better if I just go ahead and bow out for the most part.

Thank you all for your patience while I hemmed and hawed about this.  I hope to get back someday in the not too distant future.

In the meantime, I would like to leave you with one last piece of advice from Eric’s Wife.  Whenever I face anything like this and I start to feel a bit anxious, I just adopt my “Whateverdude, Jesus is ABSOLUTLEY coming back for me” Attitude.  WA, for short.  A Whateverdude Attitude is how I roll.  Unless I’m on a scooter, and then that’s how I roll.

Perhaps you’ve noticed that I have been a bit sparse around here lately. You’re not the only ones I’ve been neglecting. You haven’t seen my fridge, but let me tell you, he’s been neglected something fierce as well.

I’ve been quite under the weather and I didn’t want to make a report of it because there just wasn’t any good sense to making a public fuss about it. I had a marked relapse of MS that was made worse by all my regular symptoms getting revved up significantly. On top of this, I had extra kids to stay on top of and my health took a huge hit.

This flare up had me more afraid than I care to admit to. I feel as though I am trying to walk in neck high mud. Everything I put my hand to is an effort beyond description. The fear of a permanent disability hovered just above me every day and it started to really affect my thinking. I couldn’t write about much else and so I chose not to write.

Why mention it now? Because there is light at the end of the tunnel. And I am reasonably certain it is not a train.

The symptoms of the actual attack, which included a twitching nose (VERY annoying) and a dropping foot, have all but completely gone away. My fear was not eased as the symptoms eased because I was finding myself still unable to keep up with my home and family to the standard I have for myself.

My perception of everything changed at about 10:30 last night. I got up and started to clean the kitchen. Really clean the kitchen. I kept telling myself that I needed to go to bed soon and that I should stop, but then I realized that the same thing had happened the night before, and the night before that. What was it about the hours after ten or so that suddenly gave me a boost of strength and ability?

The air conditioner.

You’ve heard me gripe before about the severity of our cooling drama. What I didn’t realize was the profound effect it was having on me. I’ve had MS long enough to be well acquainted with Uhthoffs Phenomenon, which is the sudden worsening of neurological symptoms brought on by heat exposure. It is why I do not walk to the store between May and September.

The best my air conditioner can do on a very good day is keep my home at 79 degrees during the hottest hours. This means that all day long I am working up a sweat and getting over heated just enough to maintain a certain level of inability, but not enough for me to make the connection until just last night.

Eric and I were both overwhelmed with relief to make this discovery. And it helped us come up with a solution. Eric will be waking with the children while I will be using the night time hours to do my housework until we are able to move. We are not certain where we are moving, we just know that it has to be a ground floor place that is not subject to heat rising.

During the day I will simply do my darndest to avoid getting hot. This means I will only do the bare minimum of housework and childcare, leaving the bulk of housework for the evening hours when I can work without falling apart.

It also likely means I will remain sparse around here, as I tend to get wild attacks of word salad when I try to write in the heat.

I have been in a bit of a dark funk these last few weeks, thinking that all my years of relative good health were coming to an end and I cannot begin to tell you how positively over the moon I am at these recent developments.

God’s grace is sufficient for me. His power is made perfect in my weakness. I live this. And right now I am going to live it with an ice cold Dr.Pepper and a rerun of I Love Lucy.

My maternal Grandpa served in the Philippines in World War II. He came away with bullet wounds, soul wounds, and a desire to never again see any creature suffer.

Today is Memorial Day and I would like to share with you a bit about Grandpa’s war experience. This is a real treat, because it is not I who wrote this, but my dear Grandma. He first told her what he saw in the Philippines nearly forty years after it occurred. This is her account of what he told her, taken from her book “After the Darkness of Night Comes the Dawn”.

After we finished our meal, he pushed his plate back, looked very serious and spoke with a highly shaky voice, “I need to talk to you. I think I know now why I got the Silver Star.”

He began his story with Saturday, March 24, 1945, when they took the town of Santo Tomas and drove the enemy out. They had to go house to house, store to store, running all the Japanese out.

The Filipino people had fled to the hills after the Japanese came in. He said it gave him such a funny feeling going into those homes with his rifle. Not only was he afraid of running into Japanese soldiers, he felt he was invading these people’s privacy. Their homes were just as they left them, with pictures of their loved ones sitting around.

One Japanese soldier ran out of the house, and several Americans shot him. Jimmie said it was a gruesome thing to see. As he was going to the front of one house, several Japanese began running out the back.

He said, after capturing the town, they spent the night in the cemetery where Japanese soldiers were buried. One man dug a foxhole and struck a Japanese soldier’s body. It rained all night that night and they stood for hours in deep water. Of course, he never slept a wink.

On Sunday, after a restless night in the cemetery, they had a mission to accomplish. The sergeant revealed to them a few Japanese soldiers were nearby in the woods and had plans to take the town back. Their mission was to hold them back.

Jimmie was made to feel sick by one of the men he had to spend time with in the foxhole. He had been in the war for some time and had become hardened to it. He kept a pouch around his neck where he kept Japanese soldiers’ teeth that he pulled after they were dead. Jimmie said that the first time he saw him pull out the pliers and pull the teeth, it made him literally ill. He did not want to be with him on this mission.

There was a schoolyard next to the cemetery with swings and other evidence of a happier time when children played there. Jimmie sat down to eat his k-rations and a kitten that had spent the night with him stroked his legs. He shared his meal with the kitten and patted it a few times.

As he was talking he would choke up, tears rolled down his cheeks and he would have to regain his composure.

He said there were eighteen men on the mission, and they started out on foot away from the little town. They continued walking and came upon a bridge with a peaceful river below.

The battle started and soon after, the soldier with the Browning automatic was wounded. Jimmie said the Browning automatic drew a lot of fire as the Japanese soldiers wanted to take it out of commission first. The sergeant picked Jimmie to take over the weapon. Things were really getting rough, and the Japanese were gaining ground.

The Americans had artillery fire that came over them for support. A round was too close and caused what they call a tree burst because it caused the trees to flare. The men were down as low as they could get on their stomachs, but the artillery was getting too close to the ground and was not going over them. Jimmie said that, in short, it scares you to death. Confusion and fear had completely engulfed the men. They had to radio the artillery to raise it or they would kill their own men.

The battle was raging and the situation was not good. Jimmie told me that when Sergeant Price said it was time to go, it was already too late. The withdrawal plan was that the man with the Browning automatic would be in the middle and three men at a time on each side would drop back simultaneously, with rifle fire continuing until they were withdrawn. Jimmie was the last one as he had the Browning automatic and was spraying bullets back and forth until he ran out.

He threw his gun down as quickly as he could and was moving out. On the way out, Jimmie was wounded and two soldiers helped him back to safer ground. They helped him onto a litter and he said his Sergeant, Lieutenant, and Master Sergeant were there.*

His Lieutenant lit a cigarette, gave it to him, patted him on the shoulder and said, “Cummings, that was a job well done.”

Tears were streaming down his face as he talked. He kept repeating over and over, “I just did what they told me to do. I was just following orders. I was just following orders.”

After he was sent to the hospital in New Guinea, he had a lot of time to think. He realizes there were other battles he went through that were probably worse, but they were always on the move and he didn’t have time to think about them. This battle went over and over in his mind. He tried reading his New Testament and he prayed, but the memory was still with him.

He remembers being next to a Japanese soldier who was a prisoner of war. He was in a wire cage and was able to speak English, so Jimmie was able to talk to him, give him cigarettes and so forth. He realized this man was away from home also. This man had a family and wanted to be home with them also.

He doesn’t know when his memory left him, but I’m sure he was grateful when it did.

Here was this gentle farm boy who never wanted to hunt or fish because he didn’t want to kill anything. I thought of how, through all of our married life, he would not kill a mouse that ran across the floor or even swat a fly. He always said that they have just as much right to live as we do. This gentle lover of all creatures was given a gun, sent overseas, and told to kill humans.

When the horror of war was more than Jimmie could take, his mind blocked it out until such a time as he could handle it. Although he hates war, he tells me he knows cruel dictators have to be stopped. “It’s like seeing your neighbor beating his kids or another neighbor, or trying to come into your home to make your way of life unbearable.” He said he is proud of his country and wanted to keep it free. Maybe someday men will find a way to live in peace.

*Grandma wrote this a few years before Grandpa passed away. It was also written before he was able to bring himself to tell her about the two days he actually spent waiting for those soldiers to pull him off the battle field. That’s a story that she told me the last time I ever spoke with her. I wrote that one down and will share it another time.

I have only three recipes that are all mine. This means that there are three things that only taste the way they do when I make them. This is a big deal to me. I guard these recipes and only share them on very rare occasion with dear friends who are in great need.

I’m not going to tell what two of those items are, but I let it leak that I make the best peanut butter cookies ever and I think it is only fair that I shared my much tweaked, and highly prized recipe.

Why am I sharing this recipe and risking the very real possibility that you will no longer need my friendship because now you can make your own cookies? Because I want to say thank you. Thank you for reading. Thank you for commenting.

You may never know just how much I get out of this writing thing, but I hope that having a taste of the very best peanut butter cookie ever will in some way convey to you my gratitude.

Are you ready?

Preheat (duh) oven to 375

1 and 1 half cups of flour

1 teaspoon baking soda

1 quarter teaspoon salt

mix these three in a mixing bowl and set aside.

in a larger mixing bowl, blend together:

1 half cup of shortening

1 half cup of peanut butter

blend well and then add:

3 quarters cup of brown sugar

1 quarter cup of white sugar

1 egg

1 half teaspoon vanilla

1 Tablespoon milk (if you like them soft)

Add flour mixture slowly. You may find it works better to mix by hand rather than with a mixer. The cookie dough will have the consistency of soft play doh.

Here is where it gets tricky and we separate the cookie purists from the average cookie eaters. If you want the best cookie ever, you’ll do exactly as I say. If you want to hurry up and eat the cookies already, feel free to cut out a few of these steps.

Working with about two Tablespoons or slightly less of dough at a time, roll the dough into a ball and then shape it into a patty. I know that your average recipe says to flatten it with a fork, but this leads to cracks on the dough and I find the crack unattractive. We want attractive cookies, no?

After you have it shaped like a patty, dip the cookie on both side in white sugar. You want the cookie covered. Trust me. It is as good as it is bad for you.

You will be placing the cookie on an UNGREASED cookie pan. No grease or spray is needed because, hello?, did you see all the grease that is already in the cookie? They will be fine.

After you have your cookies all lined up on the pan, you will want to add the fork marks. I made them once and skipped this step. They weren’t the same. It just isn’t a peanut butter cookie without the criss cross fork pattern.

Bake the cookies for 7-10 minutes. You want them to be golden, but NOT golden brown. Golden brown cookies are too crunchy.

When you take them out of the oven, they will be very fragile until they have been allowed to sit for about two to three minutes. When they are slightly cooled, take them off the cookie sheet and put them on a cookie cooling rack (I only recently acquired an authentic cookie rack, you can put them on a plate.)

This is when you have a large variety of options. You can eat of one of the cookies, for quality control purposes, but I must warn you that one leads to two and two leads to three and then before you know it you are back to the part of this post when I asked you, “Are you ready?”. You can share the cookies, but you may wind up in the same predicament.

IF your cookies survive to the point where they can actually be stored, I recommend storing them with a slice of bread. The bread makes the cookies tender and keeps them fresh longer (this trick also works with store bought cookies).

This is where I store my cookies:

Odds are that your Grandma did not leave you with a cookie jar as awesome and fabulous as mine. I am very sorry about that, but you can take comfort in knowing that I have the best cookie jar ever.

Now you have my recipe and my thank you for reading. This is the part where you leave me a comment that says, “You’re welcome”. Get to it.

.

*EDIT*

My dear friend Sarah reminded me in my comments about the chocolate chip cookies she recently made. She totally pwns chocolate chip cookies.

*Edit 2*

Eric tells me that my cookie jar is the ugliest cookie jar ever.   I’m not saying that I would have picked it up on its own merits without the sentimental value attached, but really?  Ugliest cookie jar ever?  Also he thought “Get to it” was harsh.  So, scratch that.  And he loled at “pwns”.

“Mom? Are you sick?”

Mackenzie asked me to sit down with her yesterday so she could have a talk with me. Turns out she was ready to ask about my health.

“What do you mean, Kenzie Faye? Are you asking if I have a cold? Or a cough? Or a belly ache?”

I didn’t want to burden her with more information than she needed and you never know where kids are going when they start asking questions.

“No, I mean your body. Is it broken?”

Even though I had been preparing myself for this talk for some time, it still took me a moment to gather my thoughts and catch my breath.

“Well, Mackenzie, my brain has owies all over it that make it difficult for my body to do what my brain tells it to do,” I seriously have to give myself mad props for explaining something as complicated as Multiple Sclerosis using the word “owies”.

“Can you take medicine to help you get better?”

“There is no medicine that can cure MS, but there are treatments which claim to help slow the progression. Multiple Sclerosis is what’s called an ‘orphan disease’. This means that not enough people have it for the research to be cheap and this causes the medicine to be very expensive. It costs about $1500 a month to manage M.S. on a good month. This makes insurance companies nervous and they created something called a ‘pre-existing condition clause’. This means that I will have to wait for one year before our new insurance company starts to pay for me to get treated for Multiple Sclerosis. To be honest, there is some speculation about whether or not these medicines actually help with quality of life any more than not using them. I don’t know if I want to go through the grief of painful daily injections, terrible side effects, etc. if I am going to wind up the same way either way. You know?”

That’s not really what I said. She’s asking the questions, but she’s only six. What I really told her is that there is medicine but I don’t take medicine right now. There is no easy way to explain the many reasons I am unable to, and yet also would choose not to, take medication.

“You should take the medicine,” her eyes burn through me in such a way as she says this that I make the immediate decision that I will begin the daily injections the instant my insurance kicks in. If she believes it will work, there is no way I am going to let her think I didn’t try.

Later on that same day I found Mackenzie in the kitchen with a broom. She had swept the floor and was inquiring as to where the dust pan was. I watched as she expertly did her task and then she began straightening up the living room. I did what any mother would do in a moment like that:

I gave her an apron.

And she beamed.

I know why my six year old daughter was sweeping my floor. I know because I swept my Mama’s floor. Mom has Lupus and when I was about Mackenzie’s age I started to notice the effort with which she took care of all of us. Meals were always prepared, laundry folded, floors cleaned, dishes washed. This woman took better care of her family than a lot of Moms I knew with no illness.

I found her dedication to us and her service of us to be admirable and inspiring. I began washing dishes and sweeping floors long before I was asked because I knew that my Mama was going to do the work if nobody else did and she needed the break. I adored her and I had deep empathy for her in her desire to serve us even as she was so ill.

That’s what I saw in Mackenzie. I saw the empathy. My eyes tear up as I write this now. There is a large part of me that is so over the moon with pride and joy that my little girl has such a beautiful servant’s heart. But it is heart wrenching to know that she is now worried and concerned about things that no little girl should have to even know of. She has some actual, real fears that I cannot deny. I can’t promise that everything will be fine.

In all the years that I have lived with this disease, I have never more than right now felt a desire to see it gone. I want to tell Mackenzie that it is gone.

But then I still want her to sweep my floors after I tell her. Is there any way to refine a servant’s heart without fire? Anyone?

I had just celebrated my 17th birthday a short four days before I was first admitted to the hospital on account of the Multiple Sclerosis. It was determined that I needed an MRI and at that time there was only one machine available in all of Austin. My parents decided to take me out of the hospital in their own car and to the hospital across town that had the MRI and then back to my original hospital after.

They purchased some lovely satin pajamas for me and buckled me into my wheelchair for the ride to the car. Wide awake, and exhausted all the same, I watched as in a dream while so much occurred around me. I was wheeled to the exit and felt a bit of shock at the wind on my cheeks and in my hair. Had it been only three days since I walked through these doors, somewhat of my own ability?

It may have been my Dad, I’m not certain, but I found that someone was behind me trying to lift me into the car. I felt the chair move and knew right away that the wheels on the wheelchair needed to be locked first. It was the oddest sensation: knowing all at once that something must be done quickly to prevent disaster and doing nothing and saying nothing all the same. Just watching it happen.

My feet became tangled at the door and forced my parents to lay me at an odd angle while they got my feet adjusted. I remember laying there, so still and somber, while my brain raced with a million animated questions: Where exactly are we going? Am I going to die? Did we win the football game? What happened to the play? Who’s getting my homework? Am I going to die?

As my Dad drove to the MRI center, so carefully- as though he carried the Queen, I found that I was slipping in the seat a bit on account of my satin pajamas. I slid further in the seat and I can honestly tell you exactly what went through my head, “Huh. It looks like I’m going to slide to the floor board. Sure wish I could say something. I’m sure they’ll notice before I hit the floor.”

“Amy? Would you like me to help you up? Why didn’t you say something?” I could hear my Mom talking to me and I could feel her helping me up, but I had no strong ability to respond.

A high dose of steroids and mercy caused that first spinal cord lesion to reduce in size enough that I could again walk and use my hands by the time it turned to a scar. The exhaustion though, that has only ebbed and flowed as in good days and bad days. It’s that exhaustion that sits on me like a ton of mud and I struggle as if in a bad dream to get from point A to point B.

I have spoken before about the sensation of having my personality paralyzed. By that I mean that I often feel stunted and unable to fully express myself in speech and facial expression to the extent someone with as loud a personality as I have would like. This is maddening.

As maddening as it is, I have found great relief in writing. It feels as though I am able to properly convey the extent of my thought with the same tempo and order as I would if I had the energy to actually have a visit.

Writing has become an extension of my personality. It is through this little key board that I am able to put down the thoughts that run around and around in my brain while my body looks as though I am near comatose.

There are days when Eric gets home from work and I am exhausted. Exhausted and pleased at a day’s good hard work. I am worn out to the point that I am unable to actually chat with him about the day’s events, but I can point him to my ol’ blog and there he has it, “The Life and Times of Eric’s Wife”.

I understand now why my Grandma was always writing. Sometimes it’s all I can do not to sit down and write, even in crayon on the back of a cereal box if I’m desperate.

I just wanted to say thank you. This blog has become a bigger deal to me than I imagined it could when I started some three years ago. Thank you all for reading and commenting and e-mailing. For interacting with me in this fabulous little place called Blogger and giving my tired self a voice. It’s a hoot, ain’t it?

*Also, a big thank you to Jennifer for stepping up with the bike. You may have heard the excited shrieks from a certain eight year old across town. Thank you.

My whole take on having MS can be wrapped up in my dear Grandmother’s first and last statements regarding it. I’ll tell you a bit about her first so you can understand just how profound her statements were and why they capture so well my thoughts.

When she was 12 years old she was diagnosed with Rheumatoid Arthritis. She grew to get married and raise three children, my mother being her youngest. No person who ever met her left not knowing the greatness of God’s grace. She embodied for me the scripture, “My grace is sufficient for you, My power is made perfect in weakness.”

My Grandmother was my very own personal Rock Star. I adored her and I never felt anything less than adored when I was with her.

She happened to be in town when I was first placed in the hospital. She had watched my decline and had suggested to my parents, four months before the professionals, that I might have MS. Mom and Dad got me settled in my hospital room and then Grandma (I always called her Grandma, but I think she preferred Grandmother) stayed with me while they went to take care of my brothers, who had no clue I wasn’t at school.

Grandma sat and joked with me and helped make light of things. I didn’t know then what she knew about the road ahead of me. A nurse came in to give me an IV, my first in a lifetime. I was terrified of needles and certain that there was some mistake. I was told I was only there for an overnight visit and told the nurse as much.

Grandma gave me her hand – her gnarled, crooked – hand and told me I could squeeze as hard as I needed to, but that, “Things are likely to get a lot worse from here on, no sense throwing a fit.”

I don’t think I will ever in my life forget what it felt like to sit there and hold her hand while I got that first of hundreds of IVs. It was an instant where her lifetime of living in a handicapped, warped body was met by my youthful form just beginning to start my own journey. She knew well what was in store, and though it frightened her, she gave me strength.

I have often thought that God gave me that moment. That starting of the race with my Rock Star at my side. She lived hours away and was just there for a random visit. My parents could have stayed for the IV. Instead, the stage was set for just her and I to sit there and quietly share what was to be her legacy and my charge.

It was less than one year later that she lay dying. Her mind was riddled with Morphine to ease the depth of her body’s pain and she was in and out of conscious thought. My mother was at her side and listened to every breath as she slipped further away. A few days before she was finally freed from her body, she opened her eyes and said to my mother with great clarity and certainty, “Amy’s going to be just fine.”

She taught me many things. She taught me to always match my underwear to my outfit. She showed me how to close Tupperware with my elbow. She impressed on me that it is never too late to learn something new.

More than anything in the world my Grandma taught me, she taught me that this body, this life, this everything, is nothing without the grace of my Savior.

Her words to me at the start told me that there is no sense shrinking back. I must always be prepared to stand against whatever falls in my path.

Her final words about me confirmed the end game God has planned for me all along, “Amy’s going to be just fine.”

If you have known me for long, you have likely heard me say that I am not certain I would like myself too much without MS. This disease has taught me humility, it has forced on me endurance, it has robbed me of any thought but that of Heaven and my Savior risen.

Having children and a husband to look after has changed my tune a bit. As much as I appreciate the many benefits to bearing this daily cross, it saddens me to see that my children must bear it as well.

To be honest, I have declared to the LORD that I am just about lessoned out and am ready to be all that my family needs me to be. As much as I think I am fed up with my circumstance, I remember what my Grandma told me in the very beginning and pick my chin up. No sense throwing a fit with so much to be done.

In the end, I know beyond any doubt that I will be just fine. And know that I have a Rock Star saving my seat.

I spent one last night with Grandma in the hospital before she passed. She gave me her last bits of advice, and I told Mom the next day that everything Grandma told me could be repeated in this song. Mom reminded me of this last night and I couldn’t post this without including the song. Even if you’ve heard this song before, and especially if you knew Grandma, give it a listen and hear what she told me.

Thank you for all your e-mails. I was quite surprised at how many of you had questions, and at the volume of questions some had. I have decided to only address some directly and to try to answer the rest in a more broad manner with detailed accounts. Feel free to ask any other questions that come up.
What is one question you hate being asked, and what is one question you wish people would ask?
I really like this one. There is one question that I feel uncomfortable being asked above all other questions and this usually comes after someone has seen me looking pretty poorly: “Do you feel better?”.

The answer is almost always no. The truth is that M.S. is a chronic condition, chronic meaning that it never goes away and that it is usually either not actively getting worse, or it is getting worse. It is rare that it gets better.

That’s just the nature of the disease and I don’t like the question because I feel like a real negative person when I say, “No, I don’t feel better”, so I usually just say that I am feeling better because it takes less time than explaining why I don’t.

Second only to that is when people suggest that I take a nap. I know that it seems obvious that a nap will rejuvenate someone who is tired, but again, it doesn’t get better.

A better question to ask, if you honestly want to gauge the current state of someone with a chronic illness is, “Is this a good day or a bad day?” That is a question I can answer because while it doesn’t get better, some days are better than others.

Before this question, I couldn’t have told you if there is a question I want people to ask, but I think the first part of this question is one of the best ones I have ever heard. There are some things I would rather people not ask and it is nice to be asked if certain questions bug me. Thank you, Susan, for the question.

Do you get tired of people asking you to do things that you don’t have energy for?
Another good question repeated by Ruth Ann and that Sarah asked me some time ago and has adapted beautifully to. The answer to this one is that I would like the opportunity to say, “Yes, I’d love to”, even if it’s only once in a great while. Please ask often and don’t be surprised or offended if the answer is usually no because I just may be up to it one day, and boy, I am a HOOT to hang out with.

I also have a very hard time making plans to do something in the future. I can’t commit to going to a movie tonight until it is tonight. I don’t know how my body is going to feel and I can’t guess because it is always different. Sometimes I say no to plans only because I feel bad having to back out at the last minute.

When I do choose to go out and do some activity, it is always at the expense of some other chore or parenting duty. I only have so much energy and something must always be left undone in order to spend energy doing something else.

Sarah wants to know how I keep my house so clean when I feel so worn out.
The answer to this is simple: I clean it.

My reality is one with very limited energy, so I prioritize what needs to be done in any given day. Number one is usually the kids and whatever they need. Number two is my home and keeping it tidy because I just can’t feel clear headed in a messy house. Eric is rarely home and requires very little attention as long as I am keeping up with the house and cooking, but I try to make sure he doesn’t get too far off my list. If he wants extra time from me, he usually tries to help with some of my other tasks to “buy” the time.

This means that anything else is extra. It is rare that I am able to do extra things like Ladies Bible Class, or play groups, or just fun outings, but this is my reality and it is one that I have adjusted to.

I can’t take complete credit for it always. My Mom popped in last week and detailed my kitchen for me. It is really hard for me to accept, and almost impossible for me to ask for, assistance. That is my own fault and it works to my benefit that the lady who bred that into me knew better and came to clean my kitchen.

(Thank you, Sarah, for the public clean house props.)

I think I can safely answer all other questions by simply telling you my M.S. story. When I was 17 years old I noticed that my left hand felt tingly and numb. This continued for a week until my right hand also became numb. After my right hand, things began progressing by the day instead of week. Two weeks after my Mom took me to the first doctor for a numb left hand (“she’s just stressed”, he said), I was in a state of functional quadriplegia. This meant that I could move my arms and legs to some degree, but they were useless to me for any function.

This became the body that I lived in for about a year as I went to physical therapy and took copious amounts of intravenous steroids. Anyone who has taken – or knows someone who has taken – steroids, knows that it wreaks havoc on one’s psyche. I had your regular teenaged angst made all the more volatile with the addition of mood altering drugs. I have decided in the last few years to never again use steroids.

My senior year began and I was able to return to school. I remember much of those first two years as more of an observer. I often felt like I was a tiny one inch version of myself rambling around in this giant, stupid body which refused to do my will. I was frustrated and eager to be taken seriously as something more than, “that girl who got so sick”.

My body recovered to some degree, but carried with it a residue from that first attack. I will discuss in a moment the exact nature of my current and, so far, lasting condition.

I was asked how I have gotten used to being in this body now. The answer is simply that I can’t. That has to be the most frustrating part. It is a maddening thing to feel like my personality is paralyzed by a body that won’t work properly. It is not something that I can get accustomed to, though I do feel like it is something I have developed a bit of a sense of humor about.

As I have aged with this diseased body, I think I have gained a certain perspective about how to at least live in it gracefully. I no longer feel compelled to feel guilty when backing out of prior arrangements. I always feel bad about putting people out when they must change their plans because I can’t keep up, but I do not feel guilt. I did not manifest this illness, therefore I cannot be held responsible for its limitations.

State of the Body Address
My current symptoms on a “good” day are the same as a “bad” day, with the exception that a bad day just seems like the symptoms get revved up. The last year has seen a bit more progression than I was prepared for, so I am still getting my bearings.

For the last twelve years I have had a sensation as though I am wearing a corset that is about two sizes too small. Some patients call this the “MS Hug”. Hug sounds more cheerful than it feels. In addition to the corset, it feels as though someone has placed quarter sized marbles along my lower ribcage that are embedded into my flesh by the pressure of the corset. On a bad day, this sensation makes me want to cry. Sometimes I do, but then I laugh at myself for being such a baby.

The pain along my lower ribs sometimes travels to my legs and causes a crushing sensation like one might expect from a wood press. My Dad has such devices in his workshop and it sometimes makes my legs hurt just to look at them. I really only experience this pain in an unbearable way if I have a fever, am over heated, am tired, or if I have walked too much.

I have a “restless leg” sensation that is also in my right arm. While I have heard people say they experience this only when resting, I find that I have it just about all the time. It makes walking frustrating and is worsened greatly when I am tired. I find that the physical frustration of this often make me feel mentally frustrated and impatient.

I have also felt all these years as though I were wearing socks laced with Icy Hot solution. My brothers know what that stuff is. My feet and legs up to my knees lack proper heat/cold sensation recognition and have a constant tingly, chemical burn like feel.

If you can imagine wearing a pair of rubber exam gloves under a pair of leather gardening gloves while trying to thread a needle, then I think you can imagine what my hands feel like. My fingers often twitch and appear to play an invisible piano if I am not watching them closely. This makes talking on the phone difficult some days because my fingers will disconnect the call if I am not ever mindful of their position. Concentrating on them complicates my efforts to stay focused on simple tasks and makes more intricate tasks daunting.

My eyes often hurt to move and my vision becomes darkened as though the sun has gone behind a cloud. I have several moments throughout the day when I see shadows, or movements out of my peripheral vision that are non existent, except in my damaged eyes.

I have often heard that one of the more frustrating parts of having a chronic illness like MS is that it remains virtually undetectable to the casual observer. I would have to agree that that is one of mine. While I am happy to be able to walk and function somewhat normally, I am likely to need a wheelchair for lengthy activities and it is tiring and a bit embarrassing to to feel as though I have to explain why when I look just fine. If I was missing a leg or deformed in some fashion, nobody would think a thing of me having the limits of a disabled person

I have gotten dirty looks for using store offered scooters when I have no obvious disability and I was even yelled at years ago by an elderly woman for taking the last handicap parking spot with what she was certain was my Grandma’s permit.

Sometimes I even have trouble convincing myself that there are certain things that I just can’t do. In fact, I think I just might be my hardest sell.

My Prognosis
Some of you wanted to know what the future holds for me physically. The easiest way to answer is to say, “I don’t know”. The more complicated answer is that, based on my current condition and the laws of averages, I will likely remain as I am with a slow degrade marked by periods of no change. I figure that in the next ten years or so I will stop wearing heels all together and I will eventually start wearing only shoes that aid proper walking. My personal unease with Velcro will likely be put aside in about 25-30 years and by the time I am 60, I’m okay to be perfectly content with elastic waist bands and tennis ball bling on my walker.

Perhaps by “prognosis”, you were asking if the disease is fatal. The truth is that it is quite rare for someone to actually die from MS, though it is not uncommon to die from MS related causes. In the less ambulatory, blot clots that lead to stroke or heart attack are common. In the bed bound, pneumonia that won’t heal is not unheard of.

My Grandmother, for example, did not die from Rheumatoid Arthritis. However, she died because she had R.A. Her hip replacements got infected which wouldn’t heal and led to her ultimate death.

They say that M.S. takes ten to twenty years off a person’s life expectancy. I think this number is just an average based on the fact that every case is very unique and different.

No doctor can tell me if I will suddenly get worse, if I will continue my slow progression
(and it is quite slow) or if I will stay in the same condition I am in right now forever. Personally, I like it better not knowing. I can accept the unknown easier than the known.

Tomorrow I’ll tell you why, given the chance to never have this illness, I wouldn’t change a thing. (And why that doesn’t mean I wouldn’t mind kicking it to the curb.)

Happy MS Awareness Week.

Have you ever had a sudden burst of productivity and emptied your refrigerator of all Tupperware laden with left overs, only to decide that you are too tired to actually empty and wash said Tupperware and instead you put the food back in the fridge to tend to another day?

I did. Twice this week. And I am not the least bit ashamed. Perhaps tomorrow will be my big day and I will actually do it. Perhaps. We can only hope.

The last few days have found me in a position to feel inclined to discuss my health in more detail than, “I’m fine” with some close friends. It made me start to wonder if perhaps I should be a bit more on the level and perhaps give a once and for all answer to some of the questions I am often asked. It happens to be M.S. Awareness Week (Where’s your ribbon? Just kidding. There’s no ribbon.) What better medium than a blog to share and raise some awareness?

I have given this much thought, mostly because I like nothing less than to be considered a whiner who can’t suck it up, but also because the most important thing I want people to know about the disease is that it is only a tiny fraction of who I am but a large piece of what makes me proud of who I am. I finally decided that I cannot discuss the details of my health and its current state without also talking about the true blessing of misery.

That said, I would like to discuss Multiple Sclerosis in two parts. In the first I will talk about the clinical nature of the disease and what it is to me specifically. In the second, I would like to try in some way to convey just what I have learned living in this body.

I would like to do the first part tomorrow, so I would like to now open the comments up for any questions you might have about MS that you would like to see addressed. There are no stupid questions, save for the ones not asked. If you would feel more comfortable, feel free to e-mail me at ericswife AT hotmail DOT com.

This is something that I generally prefer to discuss in cryptic tones with little detail, but I really feel like I need to be fair to myself, others who suffer chronic disease, and any who would like to help but don’t know how.

So, ask away. I’ll just be sitting on my sofa thinking about Tupperware.