Monday, November 28, 2011

Blooming where you're planted.

Several years ago... and I do mean several, my sis gave me a small plate to hang in my kitchen. I don't remember the occasion to my shame. Maybe a birthday gift or a house warming gift or even a 'just cuz' gift. She's like that. She'll see something that she knows you'll like and will gift it to you 'just cuz'.
Here it hangs still in my shabby little kitchen. It has spent many years there with it's little but, encouraging message. "Bloom Where You're Planted." I am so grateful for it's reminder every time I see it.

This fall has brought another reminder of this to me.
I keep African Violets. I have several because it is hard for me to walk passed them in the grocery store. So, over the years I have acquired several. I've even been able to start some from cuttings.
Some do well and other do not. I don't know why. I just keep them and try to meet their needs as best I can.
This fall has been a good one for them and for me. They have been living examples to me of "Bloom where you're planted".

And so, I walk this life. Some times I do well. Some times I don't. I don't know why. I am however grateful for the little reminders placed in my path to Bloom where I'm planted.

Sunday, November 20, 2011

"Christ is everything, and His will is the pulse of our soul. We are perfectly content either to be ill or to be well, to be rich or to be poor, to be slandered or to be honoured, so that we may but abide in the love of Christ. Jesus fills the horizon of our being. "
quoted from "Till He Come" byCharles Spurgeon

Sunday, October 16, 2011

the tight rope

Fall has come. There is a chill in the air and we've been seeing water laden clouds roll in and out for the past few days.
We've also seen the seasons first colds roll in.
The first evidence of one cold was with a visitor from NY, tho' he was keeping it at bay by mega dosing vitamin c while he was here. It was a harbinger. I knew it wouldn't be too long before the cold season was on us all.
Soon we were hearing of others that had been suffering from a end of summer cold. After all school was back in session and we all know that that is a factor in the first appearances of sniffs and coughs.
Our NY visitor went home and finished his siege with his cold. Two weeks later we were battling our own. G was hit with a bolt. This poor kid never does well with colds. He gets hammered every time. Even though both of us take vitamin c daily.
For the past couple weeks I've felt as though I've been walking a tight rope. I haven't felt really bad but, I haven't felt really good either. I know my body is at war. I have felt an increase of my ms symptoms. They are more severe. Thankfully I haven't noted any new symptoms.
In fact this cold is reacting with me just as the last one did.
The last one was early spring and also didn't hit me hard, in the normal cold sense. I spent the month of March on the same tight rope. Not really feeling bad but, not feeling good either. And only really aware that I had a cold because my body was at war and all my ms symptoms were exacerbated. I spent the whole of March this way. So I am totally expecting that October will play out the same.
I am thankful however, because, even though my symptoms are flaring, this is a proving ground. I've been trying to improve my immune system by taking supplements. These supplements have been a part of my regiment since my diagnosis. I've tried to be diligent but have oft times wondered, Is it worth it? Is taking upwards of 10 different supplements a day worth the effort?
If the past two cold battles are indicative of the answer, in my case, It is Yes. Though I still am having a war with the cold, I'm not getting slapped down by it.
There is another aspect of supplements though. This aspect is another tight rope. One needs to be careful with supplements. It seems that someone with ms can over excite their immune system by taken certain supplements or even just too much of common ones. I've been learning it's not a good idea to over excite the immune systems. We need to stay clear of the supplements that boast of the ability to boost immune system function. In someone whose immune system is already too active i.e. already prone to attach itself, immune system boosters aren't such a good idea.
I've been learning that no matter what supplements I am taking the most important thing is to do the research about them. I like to know what I am taking and why. Starting with the lowest dose to see how I react to it before I continue or before I increase the amount seemed important. I try to remember that a lot of the foods we eat already have vitamins and antioxidants in them.

I try to walk the tight ropes and am thankful for them. They have been guides.

Saturday, September 3, 2011

Life Upside Down ~ the 12th month since my diagnosis=one year down

Usually when one announces a one year anniversary you half expect to hear a fanfare. Maybe that fanfare only plays in your head or you hum it to yourself. In this case there is no fanfare and if there was one I fear it would be a half hearted two or three note off key fanfare.
I don't feel very triumphant. Actually I don't feel triumphant at all. It has simply been a year. A year of Status Quo days, the new norm, the trying my best, and grace abounding. The later being the celebratory point. My Jesus has seen me through it all. To Him be the thanks and the glory.
It's not easy for any of us to walk this life. We all have rough roads, periods of smooth sailing, valleys and mountain tops. I am just thankful that no matter what is going on, whenever, whatever, as we all can a test to, we can cast our full cares on to One that cares deeply for us all.
This year has been full of disappointments, joys, strengths, weaknesses. Looking back is hard to do and is sad. Though I am so grateful I have made it through and I know I will be guided on, it is still hard for me and sad to realize other than making it through, nothing has changed. The days are still the new norm, the Status Quo. I have known this disease would do this. That ms doesn't stop it's progression. And as I have mentioned before that it is disheartening in that fact.
Never the less, onward we press.
Through out this blog I refer to my days as the status quo. This is just my way of trying to simplify what happens every day in this journey, the effects of my ms.
Each of these symptoms seem to happen every day to some degree or another. It's hard to think that these can come and go through out a day or even though out an hour but, they do.
I'll start with the most earliest symptom of the morning. This symptom can show itself anytime of day or night but, since it is the one I first experience every morning It gets top bill.
The 2nd most earliest symptom evident in the morning is Balance.
I also am aware of my nausea.
Acid reflux may be evident as well. I have been on omeprozole to help this so it is to a lesser degree but still rears it's head. I have been taking it for most of the summer and have decided that I should try something else. The only something elses I came up with is peppermint and acid busters like tumms. The acid reflux still happens but, has been tolerable?I'm not taking omeprozole at the moment. Not that I think it's bad. But, the warnings on the package made me think I should give it a rest.
As I progress through the day my cognition issues will show themselves. This depends quite a bit on the load that the day has in store. I haven't had a symptom free day for a long time. In fact. I have only had one since my diagnosis.
Sometimes this cognition stuff is just a little fuzzy thinking. You know forgetfulness. Losing, I mean misplacing things. Little stuff like that. Most everyone does this kind of thing. Our minds are busy with going about life and some times the thoughts slip a cog. Other times this gets worse and I just have to stop and give into the fog. I haven't had an episode of the dizzy, lack of vision, cognition trouble thing happen for a while now. Maybe the low key lifestyle is helping dissuade that? Maybe not.
I am usually not weak in the mornings but as the day progresses the weakness follows suit. Other days the weakness is right there and hangs on. It's hard to describe these things. I've often thought that describing these things is ridiculous. Everybody gets tired. Everybody feels weak sometimes. Everybody has good days and bad days. So what's the big deal. So I feel weak sometimes. ? Well, on the flip side, it just plain scary, unnerving to be reasonably fine one moment and the next have your right hand lose 20% of it's strength. Just like that. And granted maybe the next minute your full strength is back or maybe not. Maybe it progresses to 40% loss of strength. Maybe it last for an hour this way or maybe the whole day. And then you do the battle in your mind that happens with each recurrence of the symptoms you have every day. The battle that makes you ask, is this going to stay this way always now? Is this the loss of the ability?
I don't want to be the whiner I feel myself becoming but, I do get scared. A lot of times I worry about this life of ms. I remind myself to cast my cares upon my Jesus and that He cares for me. I still have the troubles but, He cares for me.
Pressing on.
There are a few symptoms that I have that I haven't mentioned in the blog. I may have eluded to them but that is all. And that is all I will do here as well. They are still a battle and a battle the garners my greatest attention. To keep them at bay, I try to drink 8 to 10 glasses of water per day. I try to eat properly for me. Some people won't or don't have trouble with certain foods. I have tried to learn the ones that give me trouble and I stay away from them. If for some bizarre reason I forget the trouble makers and partake of some, I never get away with it, they always cause a problem.
A long this line, I take cranberry caplets daily. I also eat canned whole cranberries for lunch or dinner daily. Though these two cranberry supplements are taken for two different reasons, I have learned that for me cranberries in whatever form are a God send.
As to water. I can't speak highly enough about water. We take it for granted so much of the time.
I have always liked drinking water. I am so thankful that I have lived in a place that the water has always tasted good. I know that a lot of people don't care for water. Members of my own family are like this. But, from research we can learn all the benefits of water to our bodies. Water helps everything your body does. Keeping hydrated is so important. If you don't care for the taste of water add a little lemon or lime juice to it. Try to remember that other drinks can actually rob your body of water. Coffee and tea are diuretics. o.k. off the soap box now. ;-)
For me, if I didn't drink as much water as I do I would be in big trouble in a big hurry.
Little things I've learned over the course of this year.
Not to push a bad hand.
Stealing that term from card playing. Simply means if your cards are bad, you fold. You can't really win if your cards are bad. Bluffing, for me, requires at least a couple good ones.
Some mornings I wake up with the grandest of plans. So I start to prepare. The event solely depends on the ease of preparation these days. What kind of cards you get dealt through the morning. If all goes well, the event can progress. If things start poorly, the event gets pared down. If all the cards are bad, we fold.
My kid helped me with another analogy. It can be seen like launching a rocket. As we get ready for the day, we use the "Go" "No Go" principle. If something happens during the preparations we weigh what happened and decide if we can over come this and "Go". If it is too great of a problem, it makes the mission a "No Go"
Each step along the way gets weighed. Each step gets it's "Go" or "No Go". Last week we even made it a good way down the road before a "No Go" appeared. We of course are not immune to disappointment. But these guidelines seem to have made us safer and have kept us safe.
A few last thoughts.
MS has made me a liar. People greet me and ask, "how are you?" My most common response is "I'm fine". When more than likely I do not feel so fine. This is simply the easiest answer.
The hardest thing of the year is the "day to day" "no stopping" of my ms.
The kindest thing of the year was sent in an email shortly after I notified family of my diagnosis. It read. "I don't know what to say but, it doesn't mean I don't care." The strangest thing of the year was in the form of a comment, though by a concerned person. It was. "Do you still have ms?"
The most wonderful thing of the year is the love unbounded made evident.
I don't know how I look, I just know how I feel. I see the concerned looks on family and friends. I see the questioning looks on strangers. Granted this could be because of my choice in eyewear.
I battle fears and depression, tears and worries. The thing that ms has given me is a knowledge at how flawed I am on all levels. And how bad I need Jesus. Thankful He is near.

Friday, August 19, 2011


A water bearer in India had two large pots, each hung on each end of pole which he carried across his neck. One of the pots had a crack in it,and while the other pot was perfect and always delivered a full portion of water at the end of the long walk from the stream to the master's house, the cracked pot arrived only half full.
For a full two years this went on daily, with the bearer delivering only one and a half pots full of water in his master's house. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfections, and miserable that it was able to accomplish only half of what it had been made to do. After two years of what it perceived to be a bitter failure, it spoke to the water bearer one day by the stream. "I am ashamed of myself, and I want to apologize to you." "Why?" asked the bearer. "What are you ashamed of?" I have been able, for these past two years, to deliver only half my load because this crack in my side causes water to leak
out all the way back to your master's house. Because of my flaws, you have to do all of this work and you don't get full value for your efforts," the pot said.
The water bearer felt sorry for the old cracked pot and in his compassion he said, "As we return to the master's house I want you to notice the beautiful flowers along the path."
Indeed, as they went up the hill, the old cracked pot took notice of the sun warming the beautiful wild flowers on the side of the path, and this cheered it some. But at the end of the trail, it still felt bad because it had leaked out half its load, and so again it apologized to the bearer for its failure.
The bearer said to the pot, "Did you notice that there were flowers only on your side of the path but not on the
other pot's side? That's because I have always known about your flaw, and I took advantage of it. I planted flower seeds on your side of the path, and every day while we walk back from the stream, you've watered them. For two years I have been able to pick these beautiful flowers to decorate my master's table. Without you being just the way you are, he would not have this beauty to grace his house."
Each of us has our own unique flaws. We're all cracked pots. But if we will allow it, the Lord will use our flaws to grace His Father's table. In God's great economy, nothing goes to waste.
Don't be afraid of your flaws. Acknowledge them and allow Him to take advantage of them, and you, too, can be the cause of beauty in His pathway.
"In Him every one of God's promises is a Yes".

Tuesday, August 16, 2011

a flower

It is not uncommon for my beloved to come up to me and present me with a flower that he has picked. It really doesn't matter the day, the hour, if there is an occasion or not. Actually the presentation of the flower makes the moment an occasion.
It doesn't matter the season of blooming. Each time the gift is unique. Sometimes a large flower, sometimes a small flower, sometimes one would say not a flower but,  a weed.
Sometimes he presents me with the blossom of a plant that is flowering,  though it is not a tradition flower. Just simply It's flower. It's way of setting forth seed. 
I am always caught unaware. It is always a surprise to turn to see his out stretched hand with this precious gift. He is not simply showing me this treasure he has found, though each one is it's own little treasure. He is gifting that treasure to me.
I know not what prompts these giftings. Except I know his love for me is behind each gesture. I pray my beloved knows how much I love him in return.
May this be seen as my flower to him.

Wednesday, August 3, 2011

Life Upside Down ~ 11 months in

It's still amazing to me, even though I feel sick every day, that I have ms? Even tho' I know it is true. I guess I'm just a Class A ostrich. I rather think of anything else besides ms. I would rather think of Anything Else. But, I can't, for the most part. It is always here. It is always on the front burner. It dictates everything.
However, for the past 50 days I have been ignoring it as best I can. I have still been taking my DMM (disease modifying medicine) and watching out for triggers that could bring on an episode. I am still trying to get some exercise. I am still trying to eat right and taking my vitamins.
Still,  I am reminded every morning that it is still a part of me, but I have been trying to ignore it and muddle through. But, I have learned time and time again  this is impossible. So now I'm re-counter swinging and trying to relearn about it as best I can.
Last month, on this blog, I mentioned my emotional state. Recently I found this information online at the National MS Society website. I'm not sure if this is my case, but it is interesting:
"Pseudobulbar Affect (PBA) - uncontrollable laughing and/or crying)Approximately 10 percent of persons with MS experience uncontrollable episodes of laughing* and/or crying that are unpredictable and seem to have little or no relationship to actual events or the person's emotions. A person may sob uncontrollably without feeling sad, or laugh inappropriately in a situation that isn't funny. These changes are thought to result from lesions—damaged areas—in emotional pathways in the brain. It is important for family members and caregivers to know this, and realize that people with MS may not always be able to control their emotions."

I have also been trying to figure out how to explain ms to others and to myself. It is not easy for me to do this. I had read a lot of  this stuff at the onset of my diagnosis but I don't remember it sinking in at that point. Hopefully it will stick now.
The BBB -the blood brain barrier, is a barrier that keeps your blood out of your brain. More specific, it keeps your blood out of your CNS -Central Nervous System. Sounds like a good idea? Yep. It is. The body is a wonderfully made thing.
The BBB is designed to keep things that are  in your blood out of the CNS. Things like viruses, antibodies, immune cells, etc. In Ms the BBB breaks down and allows even the good guys, the antibodies to sneak through. These good guys that do wonders for you in your blood don't do such nice things in your CNS. They get confused and mistake the myelin, the covering on your nerves,  for their enemy and try to destroy it. These damaged nerves don't want to move signals properly now. So, Which ever nerves are damaged dictates what symptoms you have. This is really a simplistic view. I am just me. I am not a doctor, nurse, medical student or even a professional of any type.
From what I have read in various books. There is a constant attack even when you are not having symtoms. So this is why the dominate symptom in a lot of us is fatigue. Our bodys are constantly at odds with it's self. 
Since my diagnosis of MS, I have had periods of time when I can research about MS and I have had periods of time when I cannot. Not because of any other constraint except for my emotional ability to do so. During the times I can research, I use the pick and chose method. I only try to read that which pertains to my ms. Reading deeper only "muddies the water". Or rather, pushes my head under the muddy water.
This latest round of research has been due to my re- counter swing and  a new book I purchased. MS for Dummies. No matter what your thoughts are about the dummy books, I have found them helpful, they seem to provide information in a bare bones kind a way that I find useful. 
I started to read this book as if I didn't know about ms. As if I was just finding out my diagnosis. Back when I was diagnosised I read alot about the whys of ms. However, during that time it was too raw. Little of what I read actually stuck. Maybe this time with be better.
For the most part, this passed month has been shrouded in depression. Nothing has changed. My days are still Status Quo symtom-wise, life-wise. I am still doing fine.
I know one thing and I am still holding on to it with both hands, heart and soul.
It doesn't much matter how I am doing. God is still on the throne. The tomb is still empty. I am still a follower of Jesus. My life is but a vapor. The trials of this life cannot compare to the glory that awaits those that love Jesus.
Yep. I am one of those.

Monday, July 4, 2011

Life Upside Down ~10 months in

This month I've been battling some depression. So I've tried to cut back on some of the things that may be strengthening it's grip. Things like keeping track of everything I eat, every thing I do, etc... I've even cut back on tracking ms symptoms. I just log the fact that the day has been "status quo" and then if any new or mystery symptoms appear I'll make special note of them. I've decide to look on better things, purer things. I can still take good care of myself and not continually look at the bad aspects of my ms. The individual symptoms that make up each day are now just termed in a log as "status quo".
I'm not really sure how to explain what's been going on these passed few months or even this passed month however. As just said, the days have been, Status Quo, same ol', same ol' stuff. I am doing well under the circumstances. Just like the doctor said last month. I've come to understand, in part, how my ms is going to effect me in certain circumstances. I've learned things I should avoid. I've learned there are some things that are unavoidable. I've learned that some days are not so bad. I've learned that I've changed.
I don't know if this is because of ms. I don't know if this is because of being sick so much.  These statements seem inseparable.
However, I don't really know if the change in me is ms caused. Is there something happening in my Central Nervous System that has cause this change? Or rather, is the change  occurring because of being sick for this long.
Clear as mud right?
I was speaking with my daddy a few weeks ago. He was remembering the stroke he had several years ago and it's effects on him. A change in him. He said since that time he doesn't have the emotional stability he once possessed. Understand, my daddy has always been a strong man with great tenderness. I know those terms seem to contradict themselves but, if you knew a man like my daddy you would understand.
Pre-stoke. he told me, he felt that he could contain his emotions better. I have witnessed what he meant.
After talking to him I started thinking of my own change.
I have always carried my "heart on my sleeve" as the old saying goes. It would never take much for tears to be provoked to well up in my eyes. Though this is still a factor, the change is instead of tear wells it is now down right sobs. If the gates are opened even a crack - it is a down right sob-fest.
I don't know if this is a physical thing that ms or a stroke can manifest or if being sick for a long time can manifest. Or possibly an emotional effect of being sick for a long time.
It doesn't matter which when you look at another aspect.
It has fostered a greater compassion for others. And in that I am thankful. I may have gained a greater empathy towards others hurts and sorrows. I am sure this is truly the case in my daddy.  And if ever I wanted to be more like him it is now.

Saturday, June 25, 2011

A Timely Word

Rejoice in the Lord always: and again I say, Rejoice.
Let your moderation be known unto all men. The Lord is at hand.
Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things. Philippians 4:4-8

During times of stress, sorrow, or unspoken cares, we can find in God's Word a timely word to help us find our footing. A Word to help us in a troubled time. A Word to ease our hearts.
I often find my way to my Bible and try to remember to hide some precious jewels of Scripture in my heart.
For the past few weeks this Scripture has been weaving it's way through my heart and mind. I thought that today I would post it. Praying that it may also be a timely Word to those who visit here. 

Wednesday, June 8, 2011

The Head Doctor

The other day I finally had my appointment with my neurologist. It had been postponed a month because he was called out of town. I had the choice of seeing one of his associates or waiting for his return. I waited.
It had been 7 months since my last visit.
This visit was easy. My doctor asked how I felt I was doing. I said fine but, added that I felt as though I have had a relapse. I explained my reasoning and then showed him my print outs of my symptoms for the passed 180 days.
He looked over the list. As he read through it he pointed to the most frequent ones and affirmed that these were very common ms symptoms. He continued to read the list some more and said the others aren't ms symptoms.  I wonder at this statement.
He then points to  the nausea and tells me it  definitely  isn't a symptom of ms. And says there may be something else going on. He notes that I am having heart burn as well and prescribes omephazole to help with that. He tells me that I will take one 20mg pill a day for a month to see if that will help to end it. We'll see what happens at the end of the course and go from there.
He then had me get up out of my chair and asked me to sit on the table. He did some strength tests and then checked for sign in my reflexes and eyes. Asking me about any reoccurrence of the double vision. I told him it hadn't returned since the first episode. He looked at my eyes and has me follow his pen. At my ability he says "good".
At the end of these tests he said he detected more weakness in my right hand than before. But, given the circumstances I am doing well.
He then took me out in the hall and had me walk down it and back. When we returned to the office he asked me to sit down again. I got back onto the table and he said no, the chair please. Oops, my bad.
Back in my chair, next to my hubby, he sat back at his desk and brought up my MRI images. He was showing us the different slices and the places of my demyelination. Pointing to the different areas he explains in general what they control.
Then he said according to these images I shouldn't be having any cognition trouble. He pauses. As if in thought.  He then mentions that I might be, if I were having brain shrinkage. Then he asked if I had insurance. I say no.  He asks if I would like to take another MRI and I say no, we can't afford that right now.
He tells me that his newest associate is a ms specialist. That I could get switched over to her on my next visit if I wanted.  He had mentioned her to me before at one of my other office visits. Now, I asked him what he thought would be best. Without any pressure in tone he said he thought it would be a good idea but, it was totally up to me. I told him I thought that would be fine. I am glad I did.
My current head doctor is great. I believe he is very competant but, he had told me early on that  he isn't the best choice for ms related issues. He had also said at one point they are very fortunate to have this new associate in their office. I look forward to meeting her.
The visit concluded and the doctor walks us out to the check out desk. He tells the aid to set up my next visit  with the ms specialist in 6 months. He scribbles some notes on his clipboard and hands it to the aid. I thank him as he disappears around the corner.
The aid sets up the appointment and prepares the bill for me to pay. She tells me an amount that is a pleasant surprize to me. It's half of what I expected. I don't question why. Reflecting on it now, I think I know.
Afterward, we run to the pharmacist to fill my presciption. I love my pharmacists. They also save me some expense.
So I've stated the omeprazole. The first day  had no effect. No change. The information says it could taken up to 4 days to start helping. The second day seems better. We'll have to wait and see.
Since the visit I have been trying to reason stuff out. I keep going over and over the visit. That's what I do. Trying to remember what was said that is useful. Trying to figure out what was said and how it was said. Reliving and figuring out the nuances. Gleaning.
After awhile I bounce what I think against my sounding board. My hubby. My voice of reason.
He remembers the visit as I do. He listened to my concerns. It's the brain shrinkage that has my attention. He knows my history and tells me, my cognition trouble could be something else.
The books I've read do say cognition trouble is apart of ms. None of those books mention brain shrinkage as the culprit.
So here is where I am. I have ms. There isn't anything I can do about that. I can just taken care of myself as best I can. The doctors can help me by treating my symptoms as best they can. I can, hopefully choose the best doctors to help me with that. I can, hopefully choose the best disease modifying medication to help me.
Right now I don't have and can't get the best information about my current condition. So, I can, just deal with what I know and wait to see what transpires.
Isn't that what we all do? No matter our status. We use the best information we can get concerning our current condition. And deal with what transpires.
I know I'll be doing some more research. I know I'll be trusting my Lord to guide my steps.

Research:  Since the doctor said nausea was not a ms symptom, I've hit the books on the dmm that I'm currently on. During the clinical trials they found incidences of nausea in 2% of the patients, more frequent with the dmm than with placebo.
O.k. if  it isn't something else, it must be that. I may not know for sure, but it's something. The nausea and heartburn have been the biggest trouble as of late.

Friday, June 3, 2011

Life Upside Down - Nine months in

Here we are, through our ninth month with ms. I must say not a lot has changed from last month. Which can be termed as good and bad. But, that is life. Some good. Some bad. Right?
We continue to roll through the Status Quo days. They are a bit different now. We have had what I called a relapse last month. We do have a slight softening of those symptoms. Though they do remain as part of my ms now.
I still have the normal dizziness and balance issues. They are so common now and show themselves at the same time that they have been listed in my Symptom Tracker software together as one symptom. That simplifies logging for me.
I still have cognition trouble which seems to flare mostly when I'm under stress. I try to not have stress in my life but, we all know that is not realistic. Even just a chat with someone can bring stress into your life. One or two misspoken words can load the stress pretty well.
The up side of some of my cognition trouble is the sheer comedy of it. Laughter is a great weight lifter.
The nausea has been the most unpleasant. It is still with me. Thankfully it doesn't stay solid nausea all day and night long. It comes and goes throughout. No rhyme or reason. Peppermint and the like are still most helpful.
I am still having weakness trouble. It's been the same for this past month. I am usually fine in the morning. Though some days it arrives early. Mostly now in both arms and hands. I still comes and goes.
The evening still arrives with the heaviness in my legs. I've realize that this is probably spasticity. Some evening they are heavier, tighter than others. Some times if I get up and stretch them or work them on the stair stepper that will relieve them some.
I've had some mystery symptoms show themselves. I was going to call them voodoo symptoms but, though that is what it seems like, I don't like connecting that term to me. So mystery symptoms won.  O.k. all symptoms connected with ms are mystery symptoms. But, I'm talking about the ones that aren't common, the ones that don't seem to make it on a list of common symptoms, those I call mystery symptoms. Actually they are just plain weird.
In previous months I was talking about hot spots.  I haven't had those quarter sized spots on the bottom of my feet for awhile. Thankfully. I have had  just my left foot tingly. Not like it has fallen asleep. Just tingly. And my lips have gone numb a few times with the same tingling. I've ended up biting my lips on these occasions so I try to be careful not to chew while this is happening.
The weirdest mystery symptom is visual. Out of the corner of my eye I think I see something. It differs in subject. Some times I think it's an animal. Some times I think it's a bug. Some times I'm not sure what it is, it just is.  But, when I look again it's gone. Other times I'll be looking for something and be totally missing it while looking right at it. For the most part I believe there is nothing wrong with my vision optically speaking. I believe I am just having difficulty registering what my eyes are seeing. I am learning not to react strongly to these things.
These mystery symptoms are rare, but they do happen. And they showed themselves last month and this month.
A couple of things happened this month that I am a little unhappy about. They are not ms symptoms related but they are ms related. They are my reactions to my symptoms. To be more pointed. They are my reactions to my relapse. A couple weeks before this relapse my son was fighting a bad cold. It really hung on a long time. I was mega doseing vitamin c to try and keep it from hitting me. I ended up with a light cold. Though I am not sure, I can never be sure with ms, I think that triggered my relapse.
This has set up a fear or a caring in me that I am struggling with. I am concerned with germs now. To the Monk stage. O.k. maybe not to the Monk stage. But, more than I have ever been. O.k. this is probably a good thing to some degree. But the trouble I am having is in the making my concerns and needs known to others. I am having a little trouble standing up for my self and at the same time not putting my needs over others.
I'm probably not saying this well. So I try to paint the picture.
Grandview  photo by JC-thanks
My son and I went for a drive with some of our family. We went to place some flowers on some loved ones' resting places. It was a wonderful drive and a great time. Everyone seemed to have a nice time.
After returning back to town, the driver of the vehicle wanted to stop and pick up her granddaughter before going to her house. My son and I where still in the vehicle because our car was at her house.  I remembered that her granddaughter was just recovering from a cold and had had an ear ache the day before. So I asked her to take us to our car first. She was very gracious and gladly took us to our car first. I was so sad that I had asked her to do that. It put her out of her way by several miles. But, I felt like I couldn't take the risk.
Again, a couple days later, my son and I were at worship. They had prepared a beautiful Communion service. It was set up a little different than what was usual. The wine was in a communal cup with which we would be dipping our bread into. I mentioned to my son that I may not partake in Communion this time but, he should feel free to if he wanted to. I explained my concern to him.
His loving concern for me is so touching. He asked one of the associate pastors to put some of the wine into a separate cup for me. The associate graciously put several individual cups onto the table, one for me and any others that did not want to use the communal cup. I was thankful to my son and pastors for their understanding.
O.k. maybe dipping a piece of bread into a communal cup is no different than dipping a chip into some dip at a super bowl party (aside from the spiritual level) But, believe me I'll be rethinking that too.
There it is,  my concerns about weighing my health needs against others needs. I pray the Lord will help me find the right way to make my needs known without asserting them over others needlessly.
So that's been the past month. I continue to learn about my ms. I continue to experience it daily. Physically and emotionally. I caught a glimpse of acceptence this month. I felt a small change in me concerning my ms. I'm still not sure how this will all play out and I probably never will. I will walk this life and I will never be alone. My God walks with me.
Thanks for listening.

Wednesday, May 11, 2011

Life Songs

I have two little birds in a cage. They are simple society finchs. They live in a small flight cage. I try my best to meet their needs. Warmth, water, food, safety. In return they give me an amazing amount of joy.
They are simple creatures.  Their cage is set in the kitchen and during the day I uncover them and they can see a small portion of the  front yard. At times I can tell that they are looking out there and listening to the wild birds that check out the feeders I have set up for those.
One of the most remarkable things I am privileged to witness from these two is their willingness to sing their songs for me. They are both males and they both have a song. Each  song is specific to it's owner and is the only one they sing. DaFinchy's song, to my ears, seems a bit more melodic. Pearl's song, seems more monotone to me. DaFinchy is freer with his song. Pearl will defer to DaFinchy and will only sing when DaFinchy is not.
I don't know what this means in the animal kingdom. Though I do know what it means to me. Their songs are a gift. Each time I look into their cage they take notice of me. There has not been a time that this hasn't happened. If I tarry for even a moment DaFinchy sings his song for me. It is his gift and he is very free with it and  seldom withholds it.  If DaFinchy pauses after his song is sung, Pearl will sing his. Though he is not as free with his, he still gives it.
They serve as a reminder to me. They remind me of a little poem I have carried in my heart for many years. I do not know the author.

He's placed me in a tiny cage
away from gardens fair.
Yet I will sing the sweetest songs
for He has placed me there.
Not beat my wings against the cage
if it's my Makers will.
But, raise my voice to heaven's gate
and sing the louder still.

I long to be like Pearl and DaFinchy. To have but one life song. One that gives Glory to my Creator, my Lord, and my Savior. To raise my voice freely when ever some one looks in. To raise my voice to Heaven's Gate and sing the louder still.

Lifesong by Casting Crowns

Empty Hands held high
Such Small sacrifice
If not joined with my life
I sing in vain tonight

May the words I say
And the things I do
Make my life song sing
Bring a smile to you

Let my life song sing to You
Let my life song sing to You
I want to sign your name
to the end of this day
Knowing that my heart was true
Let my life song sing to You

LORD, I give my life
A Living sacrifice
To reach a world in need
To be your hands and feet

So may the words I say
And the things I do
Make my life song sing
Bring a smile to You


Hallelujah, Hallelujah,
Let my life song sing to You (x3)

Chorus (x2)

Thursday, May 5, 2011

MS is MS

For myself and those who read this blog, I've tried to answer what ms is. It is a difficult disease to understand  to be sure.
From what I have read, MS is MS. It is all the same disease. There are just different stages.
I have RRMS. Relapsing-Remitting MS. It is characterized by occasional relapses, followed by periods of full or partial recovery. During these times the disease seems to be in remission. Though they call it remission, the disease is still resident just not visibly active.
One of the books I have states that 42 % of people with MS have this type.
This book* and others**,  list these stages.  Secondary-Progressive MS, Primary-Progress MS, and Progressive-Relapsing MS, Active MS, and Benign MS.
Even though MS can be classified in different stages by neurologists, everyone is different. We may have symptoms in common, but MS will be as individual as each of us.


Thanks for your comment. I am truly sorry for your  young friend's trouble. Your prayers for this young man's well being are precious. 

* "The First Year Multiple Sclerosis" by Margaret Blackstone 2007
relapse: A period when symptoms of MS that you've had in the past recur to an aggravated degree and for a longer period of time. Relapses are sometimes referred to as incidents, attack, or episodes.
remission: A period when symptoms lessen in severity or disappear altogether.
** "Managing the Symptoms of Multiple Sclerosis" by Randall T. Schapiro, M.D. 2003

Monday, May 2, 2011

Life Upside Down - Eight months in

This past month has been a continuance of what I think now is a relapse. All of my symptoms, save the double vision, have been evident but accelerated. Worse in other words.  The new stuff is an exaserbation. And if I understand what that means correctly, it's the appearance of the new symptoms. Like the nausea and acid reflux. For the passed two months the Status Quo has changed. Symptoms are numerous.
So I'll try to explain the days I am having now.
Upon waking I have the normal duties of dog care. This I know by rote. I am most times refreshed and just attended to the dogs. Most times walking to the kitchen is accompanied with dizziness and balance issues. In truth, through out the day, if I am navigating, I am having at least some dizziness and some balance trouble.
As the day progresses. If I am sitting down at table or computer, I am usually not dizzy but lately I am nauseous. These bouts of nausea play tag with me all day. I haven't found the trigger. But I have found a help. Peppermint. Whether it is a little Altoid or a stick of gum it seems to quiet the trouble.
If the nausea has moved into acid reflux there is no help that I have found yet.
If we are heading out some where and I have to get ready to go, that brings on my cognitive trouble. The severity of this seems to be dictated by the hurry factor. If it is not a pressure to get ready I am only hindered some. The more rushed I feel the worse the symptom.
I have mentioned before that our lives have been kept low key for a long time. And it remains that way. Thankfully. This seems to be the best strategy against my cognitive problems.
An exception to the is the days of what I have heard termed "cog fog". These are just days when you're completely fogged in with cognitive problems. I have not found the trigger for this yet. They just are and we stay put or rely on Gregg to be the director. I thank God for this man every day.
Usually the mornings go with just these symptoms. Then as noon approaches I start to have weakness issues. In months past this would just entail the right hand. But lately that has changed to include both arms and hands. If I take a few minutes rest it will subside and then I can continue on with the day. This can come and go through out the day.
I have learned that even at times that I am not experience any symptom, if there is a seat available I take it. I am no longer embarrassed to sit down at any time. Even if at the moment I am feeling strong and like I could stand for hours. If there is a seat available I sit. This action may help the evening symptoms to be stayed or not so severe.
Which leads me to the evening. By the time dinner rolls around, the morning activities will tell on the evening.  I always have dizziness, balance issues and cog trouble while preparing dinner. Thankfully again my beloved steps in and lends his expertise.
After dinner and during the evening, I'll most likely start experiencing weakness in my upper body. Sometimes the entire body. I suppose this is just fatigue from the day's activity. And I suppose that when this shows itself for a whole day it's because I have over extended myself the day before.
As the evening progresses, my legs get there heaviness.  I realize now that  this is spasticity. I've had this symptom for several years. I realize now this was probably an indicator of the onset of my ms. It is most times in the late evening. It makes sleeping a challenge.
This passed month has been disheartening to me. I don't know why this has taken me aback. It's not like I didn't know this could happen. This is and will be a progressive disease. I guess I am naive. I just hope and pray I can be accepting of things as they are and live well.
As a side note:
When I was young my family would gather around the tv and watch a weekly program. One of the main characters had a very popular tag line. He would say "No brag. Just fact." when he was talking about something out of his life.
Since the explaining of my passed month may come across as complaining to some, that is really not my intent, I will say. "No Complaint. Just fact."
This month I'll be seeing my neurologist. It will be only the third time. I am, of course, a little nervous. I think things are going as well as they can. Hopefully he'll say the same.

Friday, April 29, 2011

Inspirational words from David Wilkerson April 27, 2011

To believe when all means fail is exceedingly pleasing to God and is most acceptable. Jesus said to Thomas, “You have believed because you have seen, but blessed are those that do believe and have not seen” (John 20:29).
Blessed are those who believe when there is no evidence of an answer to prayer—who trust beyond hope when all means have failed.
Someone has come to the place of hopelessness—the end of hope—the end of all means. A loved one is facing death and doctors give no hope. Death seems inevitable. Hope is gone. The miracle prayed for is not happening.
That is when Satan’s hordes come to attack your mind with fear, anger, overwhelming questions: “Where is your God now? You prayed until you had no tears left. You fasted. You stood on promises. You trusted.”
Blasphemous thoughts will be injected into your mind: “Prayer failed. Faith failed. Don’t quit on God—just do not trust him anymore. It doesn’t pay!”
Even questioning God’s existence will be injected into your mind. These have been the devices of Satan for centuries. Some of the godliest men and women who ever lived were under such demonic attacks.
To those going through the valley and shadow of death, hear this word: Weeping will last through some dark, awful nights—and in that darkness you will soon hear the Father whisper, “I am with you. I cannot tell you why right now, but one day it will all make sense. You will see it was all part of my plan. It was no accident. It was no failure on your part. Hold fast. Let me embrace you in your hour of pain.”
Beloved, God has never failed to act but in goodness and love. When all means fail—his love prevails. Hold fast to your faith. Stand fast in his Word. There is no other hope in this world.

David Wilkerson (May 19, 1931 – April 27, 2011)

Thursday, April 14, 2011

The Same Page

I have  been reminded of a strategy I have used in the past. It has and can help me now. I started using this when my sons were young.
Kid's brains race as much as their little bodies do. It wasn't uncommon for me to be lost to their thought processes. If they came racing to me all excited about something they were doing, I would stop them and say some like "Hold that thought. You need to put me on the same page."
This was my way of telling them I had no idea what they were talking about. This would slow them down and they would fill in the gaps by explaining themselves better. Then, when I was up to speed, on the same page, they would tell me their latest adventure.
This has come back into practice here alot recently. Misunderstandings seem to happen way more often. Mostly when I am doing something that requires a measure of consentration. Which unfortunately at this time in my life seems to be everything I try to do.
At the worst. When I am concentrating on something or am lost in the cog fog. I try to understand what the person wants. Most times though, since I am not or have not been on the "same page" or even in the same book or library,  I anger quickly. I can't understand what they want or what needs to happen.
So now if I am doing something that has my full attention and, let's say, my son needs something. I have been trying to respond more  like this. Calmly, if possible, I say "I'm sorry. What did you say?" And then I really try to listen. If what he says is not easily understood. I pull out the old "Put me on the same page." That way he knows I am not comprehending and he will lay the ground work to get me on his "page". This helps me comprehend.
I am sorry I had forgotten this and I pray I can use it now to help us stay clear of any clashes. This week it has worked well.

Sunday, April 3, 2011

Life Upside Down - Seven months in

Wow. On this side of things, this past month flew by. At the start of it and through the whole of it, the month drug on and on. There is really very little "stand out" things that occurred this past month. It really was much like the month before with our status quo days and even a bits of the new stuff like the nausea and now I've realized what fatigue for me is like.
You probably know the type. The stuff that comes on to stay for whole days where you don't feel like doing anything. Anything.
I'm guessing it's called fatigue. I hope that is what it is. Maybe some depression too? I don't think that so much. I have held court with depression before. I know what it's like for me.
Anyway, back to seven months in. Like I've said most of the days were status quo. One day had status quo elements but I felt so good we hiked. It was wonderful. That's my "Stand Out" day. Then there were several days that were, I guess, I'll call them down days.
I'm stealing that from my boy. Though his down days are few and far between now. When he was young they were just that. Down days. Now I have a type of my own.
The unfortunate thing of these types of days is that they derail my exercise routine. Before this new stuff cropped up I was doing pretty good with the exercise. Now it is broken and inconsistent. I know for the next month I'll be trying to gain back some of the routine I have lost this past month.

When I woke up this morning and remembered it was the day of two anniversary dates. One is my monthly ms anniversary, the other is our wedding anniversary. I sat down at this computer to try to remember what the past month was like when the only thing I want to remember is what our past years were like.
They were good years. Yep, we've had good years. And the paleness of this past month can not diminish them one iota. And I  thank my Lord Jesus  for that.

Tuesday, March 29, 2011

A ray of sunshine

After a week of unexplainable illness, O.k. maybe unexplainable illness is a stupid choice of words here. I just mean an illness that I am not really sure of it's origin. Anyway, the very next week I was SO Much better it was remarkable.
After the ill week I had five days of the Status Quo days. It is funny to hear myself say that I was delighted to have them back. I have come to a place of understanding of those. I can navigate those.
I was feeling so good and the weather was so reasonable, I took total advantage of them all. Granted I still kept my head and didn't see if I could push myself too hard.Words from my daddy always play through my thoughts,  warning us of what spring fever can do. He would always stop us before we went out on a spring day and caution us. Be careful out there. Don't enjoy the day so much that you aren't watching out for yourself. Don't let yourself get killed or injured because you're in a rush to have a fun time in the nice weather. Those kind of comments are treasure to me. They reveal a caring, knowing, loving father.
I have mentioned before here of playing with my son's wii all winter long. I am so glad we did. When last Wednesday broke forth with ample sunshine and reasonable temperatures I told him to get ready. We are going for a hike.
I have been wanting to make this hike since last fall. And this day all the pieces fell into place. Even before my son and I could head out my hubby got home. Work had ended early. He was up for the hike too. That made it positively  perfect.  So with out further pale words from me. Here is our hike.

Friday, March 18, 2011

New stuff

I feel like I've opened a new jigsaw puzzle and mixed it with the one I was already working on.
I've gain a few more symptoms. I think. I'm not really sure. I don't want to confuse just run of the mill life occurrences with ms. As one gets older, one does have general aches and pains. Creeks and groans that didn't exist in youth.
That being said I do have a new pain following my right hand weakness. Nausea that seems new. Hot spots, Not to be confused with hot flashes. I'm really not knowing if these are ms or something else. There is also another one I can't remember right now and when it happens I forget to write it down.
Do these fall under ms or a flu/cold bug I've contracted? For the passed week I have felt so poorly. I've opted to stay home. I decided that since I am not sure if this is ms, something else, or a combination of the two, I don't want to share it.
O.k. using deductive reasoning, the hand pain is probably not a flu/cold thing. And the hot spots on the soles of my feet are probably not a flu/cold thing. And the other one I can't remember right now is probably not a flu/cold thing because if it was I would probably remember that.
More reasoning. I have felt nauseous a lot. Now I equate that with the flu, but I don't have a fever or a headache during the nausea. Hubby says ms can cause you to feel nauseous. Why haven't I ever heard that? Or read it? O.k. I've read that some DMMs can cause nausea. In fact that was a major factor in me choosing the one I chose.
I guess I'm  just shocked that I may have new symptoms. Silly I know. But I am shocked none the less. And, not only are they new symptoms, they seem to be silly/weird ones. O.k. so having this searing hand pain isn't so silly. But, just in the right hand? Actually, just the ring and middle fingers on the right hand. It comes and goes. Thankfully. Though aspirin doesn't seem help. Maybe this is something else?
And the hot spots on the soles of my feet. Just a quarter sized hot spot on the ball of my foot. The right side mostly but some times the left foot. It comes and goes. This happens in the evening or at night. Not every day thankfully.
So, here we are. Laying low and seeing if we can get over the cold/flu aspect of feeling so poorly. We'll watch for the unusual and log them when they happen. Maybe a pattern will show itself so we can learn what triggers them and then dodge the triggers. Oh, ya, this cold/flu thing? Maybe it's the trigger. And I was trying to dodge it for a month. That's life. We try the best we can and roll with the punches. I'll be watching for other symptoms.

Sunday, March 13, 2011

God is near

Dark empty places restrain every solace seeking individual only now.
How did I get here? I let this illness weigh heavy on me. I wake up some mornings and let the illness win even before my feet hit the floor.
I am weak. And the sameness of these days are unrelenting. The winter has been long. The Status Quo days have been long. My trying to keep my head above water has been long. So I stop trying to do that and put my feet on The Rock. He sustains me. I draw near and He draws nearer. I try to rest in the fact that it is what it is. I am who I am. God is near.
I know this isn't even tough yet. I know this isn't even the full course of the disease. I know I am living fallen world stuff. I know God is near to them that are of a broken heart. He works on me and in  me.
I don't know how this will play out but, I know whom I trust. And even though I go through these valleys, I know who leads me. We all have valleys. Some of the most precious, the most sensitive plants only grow in these valleys.
Conventional wisdom tells us that if you suffer from depression, do something for someone else or, some say do something for yourself. I don't know which one works for you but for me the thread that runs through both of these works for me. Do something.
However, some times doing something isn't even an option. So I pray. I read God's word. I sing the old hymns or the new songs of praise. And I thank God for His grace and mercy. I thank God for the Status Quo days and His guidance through each one.

Friday, March 4, 2011

Life Upside Down - Six months in

Six months in from my diagnosis. That's half a year! From this side it feels like it has gone pretty fast. From the other side it seemed like I would never get here. Time is funny that way. Hind sight is 20/20. Fore sight is through a  glass, darkly.
This past month has been, again, filled with "Status Quo" days. Some of which have been a little worse than others.
Early in the month I was feeling as though I was coming down with some kind of  cold. So, I think my immune system was working a bit harder. That is not a good thing in my case. I don't need it  attacking  the wrong things while trying to defend me against a cold. I have been kind of worried about that. So  we watch and pray and mega dose Vitamin C.
Admittedly I usually do take large doses of C anyway. It helps me keep another symptom from giving me trouble. But when ever I feel a cold or flu coming on I mega dose. 
So I guess that has been the main focus. Trying to dodge the winter's colds and flu. Trying to stay as healthy as possible. Trying to help my immune system to function well without over exciting it.
As far as other things go. All seems to be going well and I am still doing fine.
Our life upside down has become as though it is right side up. We will still hold dear the lesson we  have learned from Bear. But being in it for a half year now it has become the norm. It does happen. I really didn't believe it would. We've reach the new norm for us. 
I have never experience illness for this long before. This new norm hasn't been easy for me to except. In fact some days  I feel like I haven't. Other days I have.  I guess I'm still in a process. And really we all are in some way or another.
So on we go moment by moment. Thanking God, I am learning to bare up under it. I am thankful for His everlasting arms that hold me.
So, We prayerfully step into the next moment, hour, day, week, month.

Friday, February 25, 2011

Wii Play

It's been 389 days. My game tells me that. It has kept track of how long it's been in our humble abode. It also has a calendar that shows me the days I used it to play or what I call exercise.
One of the games we have and I currently use most is called Wii Fit Pluse. It is a combination of games and exercises. Their is a lot to do but, for the most part I just do the same routine over and over. The game holds my setting and is just a click away.
One of the other screens tells me that if I were a dog I would be "a very faithful golden retriever" because I stick to the same routine. G uses it for a multitude of other things. It keeps us from being couch potatoes.
The routine I use is for strengthening exercises. I try to do these 9 exercises at least 5 times a week. If I don't get the opportunity to do them using the wii I do them without it. They are not exercises exclusive to the program. It usually takes 13 to 15 minutes for me to get through them. They involve balance and core strength.
When we first purchased the console I was exercising to another program. It worked well for me also. Lately however, I've been more concerned with my balance issues.
I realize that the problem is just in my head. ( I love saying that;-)) Better put though. I realize the balance and the other symptoms I have originate in my brain. These are the nerves that the ms has decided to demyelinate. So the signals aren't making the journey as well as they should so I have the balance troubles.
I've read scores of things advocating exercise to keep my muscles toned and strong. It won't heal the myelin sheath that covers the nerves it will just, hopefully, make me able to move smoother. 
So, lately, I've been also using these exercises for a gauge. When I first start up the system I get a chance to  do a Body Test that weighs me. Then I have a chance to perform something called Measuring Body Control. The program gives you a couple test to see how contected your body actions are to your mind. Things like staying centered on the balance board and then clicking on numbers that appear on the screen using the wii remote. You have to click on the numbers in assending order just using you peripheal vision. This is a timed activity. You have to complete this in 30 seconds.
Another test is called the Walking Test. On the wii balance board you take 20 steps at your own pace and it registers on the console. After the  20 steps you'll see a read out that shows you  how balanced you gate is. There are several others.
Each time you use this part of the program you get two random tests to perform. After you perform them the game lets you know how you did by showing you your wii age. Some times this is great. If  you've done well it shows you a young age. The other day I was 40. I you do poorly. It will show you an older age. Yesterday I was 60.
This has been helpful to me. It shows me my condition for the day or for the moment. It exercises my brain.
After this I move onto the strengthening exercises. They are balance intensive. Some of them I have to use my walking stick to help me keep steady enough to  perform them. Other days I can do most of them without it. This has been a very helpful gauge.
I was reading in a book the other day about a women with ms. She uses a crossword puzzle as her gauge. She tries to work one daily. This helps her to see how she is doing. I am sure there are a multitude of others that have devised other daily activities to help them see how they are doing.
I know it may sound silly, to some, to say that I feel that the Lord has lead me in this direction. But, I do. How can a wii be an instrument of God?  The same way He uses other things to help His children where ever they may be. He does direct our paths to our benefit because He loves us.

Tuesday, February 22, 2011

Old Dog New Tricks. New Dog Old Tricks.

Most of my life I have had the convenience of being able to think on my feet. I have been able to race around without missing a beat. I was chief at multi-tasking. In fact I was doing this way before that term came into popular use. I use to pride myself on being able to get up in the morning and out the door in minutes. Showered, dressed, properly coiffured, and items needed for the day in hand.
After becoming a mom, I was pleased that I could do close to the same with two little boys.
In walks MS.
Boy has life changed. Please understand. I am doing fine. My brain is just under new management, so to speak. I could no more hurry out the door than fly to the moon. In fact. Flying to the moon really does sound easier to me. They have that down to a science. I'm still struggling with the list making.
In fact the moon launches have sort of become a guide line. They don't make it very far with out check lists. Keeping all the ducks in a row. Finishing one  task at a time so they can move on to the next. Building a foundation of proper planning.
And that's the old/new trick I am trying to learn. Making lists. I am learning that to keep me on track, on task, I need to have a check list. Actually several different lists.
I keep a running grocery list, a household activity list, a G list (this one has been on going for 18 years. It's things my son needs throughout the day) and a obligation calendar. If a thought doesn't make it to a list, it doesn't make it to conclusion.
So I'm trying to learn this and also how to use the lists for my benefit.
The Grocery List.
I keep this list on the refrigerator. It's not only a list of things I have run out of, it's a running low list too. The second I think of an item I put it on the list. Hopefully this action doesn't derail the thing I was doing when I remember I needed the item.
I try not to run out of the items we use most. I keep a household par. One in use. One in back up. That way we are stocked to the par and hopefully don't run out when we have a situation. This is also beneficail when I'm in the grocery store.
When shopping I have made it a recent habit of entering the store and going to the right. Then following the rows to the stores conclusion before checking out. I watch my list and only buy the items on it. If I am looking for one of the items and it escapes me. I let it go. I have decided not to stand in one spot looking for an item. If it isn't easily acquired it can wait until next time. The par gives me this luxury. If I am bingo for that item then I ask some one to help. Usually this is my son and it delights him to be my champion. As the shopping progresses I tear a notch in the list next to each item I've placed in the cart. The visual aid is very helpful.
We check out and get things loaded in the car. I keep a cooler in the car for the stuff that needs to be kept cold. We always try to double up on errands so if the grocerys stay in the car during the other obligations a cooler is essencial. Especial during the warmer months. However, coolers also will help insulate items against freezing temperatures too. This habit allows us to stay in town hours longer if needed.
When we do make it home we set up a relay systom. G goes and unlocks the door and then meets me half way. I take the first bags out of the car and hand them to him. Before he takes them from me I say "Comanche",  "Chinook" or even  "Sky Crane". That let's him know how heavy each is so he can set himself. He receives them  and then flys them to the kitchen. I go back to the car to get more bags and he returns half way to receive them. We keep this up until all is in.
In the kitchen I try to put the items in the same location as the par. Some times this works out. Some times it doesn't. We live in a small home and cupboard space comes at a premium.
Which lead me to my next challenge. Setting the house in order. This will take some time. I'm a pack rat. We
have lived in the same place for 35 years. You get the picture. So over the next few months I will be trying to get that job accomplished. Hopefully I will be able to work up a procedure for that.
I realise that all this may seem remedial to some. The fact is these are old tricks. And that is fine. They are pretty new tricks for me. I've been a take it as it comes sort of gal. But now, if it doesn't get written down and set in action, it simply slips away. Some things can do that and not have bad consequences. Other things can't. Those are the things I'm concerned with. The things within my realm of control. The rest I choose to lay at the feet of my Lord. He's my Champion too.

Thursday, February 10, 2011

Tracking Symptoms

I have to admit tracking symptoms makes me feel in control of something.  Even if it is just the tracking of them, it still makes me feel better.
For the past year plus 2 months I have been writing down everything I feel. As I have mentioned numerous times, a year ago December I started having trouble. I had no idea what was up but, being who I am I started writing down the troubles I was having. Over this past year the entries waxed and waned. By the time I had my first neurologist appointment I realized this back log in my little book would be ridiculous to show a doctor. So I typed out all the symptoms on my computer, made a print out and presented it to him upon arrival. He thanked me and looked down the list.
I am not 100 % sure this helped or not. Even though it did show SIT (Separation In Time). The diagnosis was already in the bag. My MRI and double vision were conclusive.
Since then I have continued logging every symptom. At the start of this year I set aside my maxed out little logbook and cracked open a new one to start tracking this year.
Since the last visit with my neurologist I have acquired quite the back log. I have been thinking it's about time to get prepared for my next visit by typing them all on my computer again. You would think that I would have reasoned this out before now. But I haven't. I should have been keeping up with my symptoms on my computer and left out the little book writing. Now I get it. This would be smart. Though pen and paper have always been dear to me.  ;-) It is time for a change.
Well, that is what I am trying to do now. This won't erase the little books back log. I am still going to have to get those typed out at some point. But, from this date forward it will be electronic.
In walks Grace and genius.
I was getting ready to type out the symptom list. I had my little books and my computer ready to get started. Then I ran across a bit of software online. I couldn't believe my eyes. Some genius had made just what I needed. Back in 2008 this man made a MS Tracking software. In 2011 I ran across the link and purchased a copy for a modest price.
I am delighted. I have been using it for only a few days so I am not solid on it yet. Still learning. But what I have so far is priceless to me.
When I first got the software, I was thinking I was only going to be logging from this point forward but, I am discovering the ability to post date some entries and therefore clean up my back log with this software too. After logging I'll be able to print out my symptoms. Talk about convenience. Have I said I'm delighted.
To find the software I simply typed in MS Symptom Tracker into  Google search and it popped up. 
I have also started to use a online food tracking  program. I had been logging my food and water intake in a log book for the same amount of time as my symptoms. Going electronic here seemed prudent too.
With this program you can choose to use the free service online or download the software to your computer. For an added cost you can link the downloaded software to the online service. So far I am pleased. It really seems to be a full featured software. Still learning it but so far so good.
It's been keeping me busy logging and back logging with both of these "new to me" systems. Hoping and Praying it will be time well spent.  I defer to the One Who is really in control of my life. I'll trust for now this is His leading to help me along the way.

Sunday, February 6, 2011

Good Days. Bad Moments.

We can all relate to this. Life is just that. We hear people say it all the time "this is a good day" or "oh, that was a bad day". Days are not respecters of persons. It really doesn't matter if you have ms, some other disease, or are healthy. We all have good and bad days.
Yesterday was a good day. However, Yesterday also had a really bad moment.
It was what we call a Home Day. We stayed home and just puttered around. Some things got cleaned. Some music got played. No stress. No fuss. The sun even made an appearance. The temperature resembled spring. In February that is a Good Day.
And we almost made it through the whole day without too much trouble. As far as my ms symptoms it was a Status Quo day. But, Since I was doing some house work, some of the symptoms that usually come and go, stayed for most of the day. Towards the end of the day I was having weakness issues and unfortunately I played right into the anger trap.
By the time dinner time rolled around for the dogs I was down to my last few spoons. So to speak. Now the dogs really don't mean to be pushy. They just are. The do have a way of really pushing my buttons. Dinner time rolls around and they want to be fed. No choice. They get feed.
Now it's dinner time for us. So dinner gets started and we get through in good shape. Gregg really is a champ in the kitchen. He also reads me well.
The evening progresses through a good dinner and some TV. The day slides away and I am feeling better. The last stages of the day approach.
Every evening requires the shutting down of the house before we retire. Nothing new for anyone. Nothing new for me. As always, I  lock up, turn outdoor lights on, feed the pets, the fish, the birds, shut down the lights for the African violets, check the pets heater, cover the birds, stop my clocks, and prepare to give G his insulin. Really routine, nothing critical.
Some times I think that is the trouble. We go through  the days on auto pilot really. Things have remained the same for so many years we don't even have to think about them. Just sail through on auto pilot. Well, not any more. Or so I have learned now. I wish I could have learned it sooner. Or maybe I did and forgot.
The second to the last thing I do before retiring is give G his nightly insulin. This night I prepared his first of two shots. I dialed it up and handed it to him. He takes it, gives himself the shot, and hands it back to me. I start to work with the other insulin and stop short. "How much did I just give you?" I couldn't remember. It was just a moment ago. I couldn't remember if I had dialed up the normal evening amount or substituted it with the normal morning amount. I feared the later. "How much did I just give you?" The blank look remained on Gs face.
The trigger was snapped. I lost it. And G sat there like a deer got in my headlights. My tirade consisted of "I need help with this stuff" and "I'm drowning and every hand I reach for slips away" As true I this stuff may be or not. And as real as my feelings may be or not,  really doesn't excuse me on this one. I know I am compromised cognitively. I've known this for some time. I've been working with G with checks and balances because of this. He's compromised too. Though most times he doesn't remember this.
We simply dropped the ball. He didn't need the verbal beating. I know better than to do that to him. He can't take it. I had just taken a Good Day child and kicked his feet out from under him. I just made him feel worthless. He longs to be helpful to me and I made him feel like a burden.
Instead of reaching to my Lord Jesus to save me from drowning I try to pull someone under with me. I realized my mistake when I saw him set his glasses aside. I am so proud of him. At other times of anguish his glasses would have been in pieces. This action makes me realize what I had just done. I apologize immediately and start working to repair my broken son.
I explain that that was my fault. I had forgotten to walk us through the checks and balances. We just need to back off of the next insulin and wait to see what transpires. I tell him how sorry I am and that we will try better to help each other. It really was my fault.
I need to remember this. I need to keep in place all our checks and our balances. I need to remember not to over exert myself during the day. Not to use all my spoons. I need to ask for help before I'm angry. To ask for help before I get too angry.
I sit with him for awhile and we pray together. Evening prayers are the last thing we always do before I retire. To the One that keeps us from drowning. We pray to the One that keeps the waves and swells from over taking us. Thank you Jesus for your forgiveness. Thank you for Your Grace and Mercy. Thank you Jesus there are Good Days. Help me Jesus in the Bad Moments.

Wednesday, February 2, 2011

Life upside down- 5 months in. Step by step.

Again I can exclaim nothing much has changed. I am truly grateful for that. The past month has progressed and we have kept step with it. We have even had some glorious adventures.
Driving has been a highlight. Not a time goes by in a car that I am not grateful. I constantly thank my Lord for the ability to drive or ride. Windshield time is precious to me. I am blessed that my two men feel the same way.
My ms stays the same, mostly. I am experiencing a couple more things but, am approaching  them with a "wait and see" attitude. I am not quite sure if they are ms symptoms or consequences to how I have been dealing with my ms.
There are also a couple of old symptoms that I have learned better to deal with in this passed month so, I am thankful for that. Who would have thought the lowly cranberry would become of so much importance to me.
I continue studying what I can about ms. I continue to log things. I have switched to more electronic logging however. I have found some good software to use to help me do so. For food and exercise I started using an online service. You can use the software online and also download it to a computer. The two can be synchronized.  I am still learning how to work with it. I do like what I see so far. I also found a software for ms symptom tracking. I am still waiting for that to arrive by mail but am looking forward to using it. It will allow me to see daily, weekly, monthly, and yearly comparison read outs.
My dmm therapy continues to go well also. I am quite use to it's effects directly after the injection. I haven't feared bees for along time. These injections feel like a sting and will bring up a red welt. It is short lived. Some days and in some shot areas, they are of little or no effects. I am so grateful for the log book I have from the company. It really helps me keep track of where the next injection site should be. Keeping all that straight with out the logbook would be taxing. It is nice to have a place to write things concerning this down. Remembering it cold would prove impossible. 
I spent this passed month in a state of "Status Quo Days". Though I did do a battle with some kind of flu bug. I was very grateful that it did not exacerbate any of my symptoms or bring about a relapse.
I guess I might as well announce that I cut my hair. I did not change the style. I just lopped off 11 inches and donated it to Locks of Love. I was inspired by a grand niece who had donated her hair a couple weeks before me. I am thankful that this program exists. It is a wonderful caring charity. I thank my Lord I could help in this way. I pray my hair  grows out good and fast because I plan to try and send some more.
So, that is and was the passed month. 5 Months in from my diagnosis. I am doing fine.
January is never a "Ball of Fire" month for us. In the past I would kick against it and call it things like "winter dull drums" or "the horse latitudes". This year it didn't seem so bad. Thank you Jesus for being here every step of the way.

Sunday, January 23, 2011

The Puzzle ~trying to sort things out

It has become one of my ways to  write out a few things in a couple logbooks  at the end of my day. In turn I use these logbooks to help me blog here. And to possibly see a pattern, a portion of the puzzle.
One logbook helps me keep track of my dmm injections, symptoms and possible reactions. The other helps me keep track of food, water intake, exercise, and symptoms as well.
The logbooks show, since the double vision episode, I have been experiencing a handful of symptoms daily. There hasn't a day gone by that hasn't required a notation in my logbooks. Most of the time it has been the same ones over and over. What I have termed as the Status Quo,  the New Norm that I now expect.
Please understand that these symptoms don't stay the whole day. They come and go. Some only make an appearance once in a day and some days more than others. It's a huge puzzle I am working on.
That is why the logbooks are important to me. They hold the information of my days and hopefully an understanding of sorts.
At times some beloved one will asks "How are you?" I simply say "fine". I don't mean "fine" as in one of the popular acronyms. I'm just fine. Not because everything is good or gone. But, because I am really doing fine under this set of conditions.
This past month I can look back and even remember a few days that  have only had one or two symptoms written down. And the other day, January 18th, I went through a day like no other. A day with no noteworthy symptoms. I was jotting down some notes in my logbooks and stopped short. I looked at Gregg and remarked about the fact that I either didn't have any symptoms today or I don't remember any.
I didn't remember any! We had been out an about and I didn't remember having any dizziness, any balance issues, any weakness in my hands! I didn't remember having any symptoms! Thanks be to God!
Since that day, I have had statis quo days. I still praise God and will take whatever days He chooses to give me. I'll keep working on this puzzle. Not that I expect to ever solve it, that is quite out of my hands. Or BOC (beyound our control). I simply want to see how it progresses. I want to remember what it has been like and I look forward to seeing God's Hand on me during the course of it. And so far, it is true, I have been able to see His Hand on me.
Looking back I can see His guidence, His support, His Grace and Mercy. I'm reminded of His Faithfullness, for He is Faithful and True. That gives me Hope.
I'll continue working the Puzzle. I'll pick up a piece and look at it. If it fits with another I can put them together and see a larger picture.
So far the only pieces that are together show a pair of  hands holding someone. And Really, that is all the farther I need to see. For it  is my Lord's Hands and He is holding on to me. I stand in awe that I am in His Hand

Thursday, January 6, 2011

Care Giving

I've mention before that I am a caregiver. I have been able to claim this title since 1994 and I am truly thankful that I have had this experience. As strange as that may sound.
Being a caregiver has given me a different focal point for these past years. It has also given me a tether that at times I have struggled against. But, this tether, has also given me a balance that I may not have otherwise had.
I'll try to explain it like this.
I use to run dogs. Snow dogs. I was part of a team, four dogs and myself the musher. I was blessed to a part of  the team for 9 years. We started out with just one dog and one musher and over 4 years we grew. The next 5 years were run with the 5 of us.
During those years I learned a little something about tethers.
A team consists of the dogs, the sled, the harnesses, the gang lines or tethers, and a musher. The dogs of course being the power source, would be of no effect were it not for the harnesses they wear and the tethers that hook them to the sled. One may think that the tethers would just be a means to move the sled and for the most part this is true. However, I have been witness to another effect those tethers allow that, I for one, did not expect.
These tethers, just flexible nylon cords, hooked to the dogs in such a fashion that it helps them with balance. The first time I saw this happen I couldn't believe my eyes. We'd been running on some back roads when we came upon a stretch of really slick stuff. Stuff that I would have had trouble standing up on. The dogs gripped the hard pack with their toes nails. I watched as each one bared their toes to get their traction. I thought we would all fall to the ground in a heap. Then I saw them separate from each other as far as the tethers would allow. The tethers became taut, rigid, a frame work to lean out from. In effect creating  balance. With their toe nails digging in and using each other to work against they got us through the bad stretches. I learned that day that the dogs could  balance and stabilize themselves by using the tethers and each others strength. I learned as my part to add an little back pressure by stepping lightly on the claw brake.
What a lesson for me.
I realized that I have been living this type of life. Indeed all of us that have families and loved ones live this type of life.
I am a caregiver and am tethered to the one who needs me to help him. But, I am also one that needs a caregiver or caregivers. The ones that live with me in this life of MS. They are tethered to me and I to them.
If we remember the lesson from the dogs and not fight our tethers to one another but, use them to help stabilize us in the bad stretches.
What a team of strength we can be when we help one another.
Once again I give thanks to my Lord who speaks loudest to me through the animals around me. I am so grateful to Him for giving me the ability to glean life lessons from His Creations. He, who is also a major part of our team.
the One that holds the strongest tether.

Sunday, January 2, 2011

Life Upside Down: Four months in.

On the good side of things- nothing has really changed in the past month. It, of course, has been four months since my diagnosis, two months since the start of my DMM (disease-modifying medication), and a few days since an occurrence of my toe trouble.
Since that was the focus of last month, I'll mention the fact that my neurologist didn't think it was a reaction to my DMM. He prescribed some over the counter hydro cortisone cream. So when it becomes unbearable I use that and it helps.
I just can't seem to keep my toes warm and I think that is why they are giving me trouble.
I had chill blains when I was little. I played outside too long in the snow with inadequate boots. Anyway, that was then and this is now. This toe trouble seemed a bid reminiscent.
Last month I did some snow shoveling with inadequate boots. I believe my toes got too cold and thus the toe trouble. Just starting on the DMM and not knowing what to expect I possible wrongly blamed it for my troubles. Note. I am still having trouble ruling it out. Though it does look more likely that I keep letting my feet get too cold.
When I was little it was a long time before the cold stopped effecting my toes. I remember several times that I would stay to long outside in the snow and suffer the consequences. Once I had chill blains the occurrences would increase. One has to be diligent to keep your toes warm to be free of the painful red sores.
So here we are trying to be diligent once again and failing. My toes feel cold most of the time. In one of the books I've been reading the author writes about cold feet being a symptom of MS. The book explains that when  MS starts to tamper with the interconnections of your nerves responsible for the diameter of the blood vessels, the perception of cold feet can happen. It also explains that your feet are not really cold it is just your perception due to nerve damage.  I don't know if I am having this symptom for sure or if I am just not being diligent enough. I'm thinking at least in part it is the latter because I am receiving damage from them being cold. If they weren't really cold they wouldn't be having trouble.
Another problem I am having is hard to admit. I am having some anger issues. I have always had some trouble with anger but, lately it's become worse. I'm really not proud of this and am praying my Lord will help me figure this out.
It's kind of like having a big 2-stroke motor with a monster power-band for a temper. If you've been around this type of dirt bike you know what happens sometimes when I get angry now. I don't think it's my DMM or even the MS per say. I think I am just angry about my situation. When I have ridiculous trouble taking care of something that needs doing and it doesn't go so easy. My 2-stroke revs up and hits that power-band. Unfortunately my sweet family gets mud thrown on them from my knobby tire. I don't like myself very much at these times.
So, that's been this past month. My other symptoms have stayed like a base line for these four months. There hasn't been any changes in them and I haven't really been able to avoid them. They just happen or not without warning. I feel good most of the time. Just slowed down.

I pray Dear Lord, help in and through all this. Help me to be loving. To come through more and more like you.