Tag Archive - multiple sclerosis

Invisible Slump #iiwk11

September 12, 2011 in Brain Surgery, Chronic Illness, Multiple Sclerosis, slideshow, Trigeminal Neuralgia, Uncategorized with 2 Comments

This is National Invisible Chronic Illness Awareness Week 

Truth is multiple sclerosis stinks.

I was diagnosed in July of 2003 during a medical workup for episodes of terribly painful stabs of pain into my left ear canal that were becoming intolerable.  That ultimately was diagnosed as trigeminal neuraliga. At the time I could not pronounce or spell it.   I’ve blogged about TN previously and the brain surgery that stopped the pain. 

And it turned out for me that trigeminal neuralgia was not caused by my multiple sclerosis; they were actually two separate neurological conditions going on.

My multiple sclerosis has set a really slow tempo of progression no doubt this is great news.  The symptoms I deal with are primarily invisible to those who deal with me on a casual basis.  I don’t walk with a limp or outward disability. On good days *the times you’d see me out and about* I look pretty good :)

Yet, if people only knew my  invisible struggles.  Fatigue that makes me feel like I’ve been run over by a truck.  Heat intolerance to the point that I can not see straight to drive after being over heated by the temperature outside or a hot bath or a fever. Migraines that can ruin two or three days in a row. Sleepless nights which lead to a bad attitude and non accomplished days. Chronic urinary  tract  infections caused by a neurogenic bladder that will not completely empty on it’s own and then requires intermittent self catheterilzation.  Cognition issues that make it difficult for me to comprehend directions given or a book I’m trying to read if there is any competing stimuli going on around me.  Dealing with these things almost constantly brings me into battling depression.

My plan today was to write a blog post about my invisible chronic illness and to top it off I saw our picture included in Montel Williams slideshow titled: I am the Face of MS

Today from tears to praise

March 20, 2011 in Chronic Illness, family, Inspiration, Love between Tommy & I, Multiple Sclerosis, Scripture, SparklesGlitter with 0 Comments

Today I woke knowing I was still exceptionally down physically.  And I’d even fallen asleep pretty much when Tommy did that’s unusual as he goes to sleep and I stay in bed watching podcasts, reading facebook or watching Netflix.  Tommy is one of those guys who shuts his eyes and is snoring sweetly within minutes. He has kindly allowed gadgets and laptops in bed with us. As long as I turn down the brightness and use ear buds.  ((there have been occasions when I’ve laughed so hard that it has kept him awake)) but that’s not my story tonight.

After falling asleep earlier than usual I’d hoped to wake feeling well enough to enjoy doing some things around the house with Tommy today.  If you only knew how selflessly good he is to me you might also know why I desire to feel my best to make the time we’re able to spend together blessed.

Yet, when I awoke I was very sore and achy.The lower backache that so often goes along with a urinary tract infection. And if I had a uti that would explain my serious fatigue of recent. Also would be the explanation for the night up with bladder spasms earlier this week. Sadly this morning things were worse. The fatigue, the pain, the lack of ability.  The sun shining outside only caused me more disappointment regarding my inabilities.   Tommy is so kind, he just wants me to be happy. Even propped up on the sofa with my mac or my ipad.  If he knows I’m enjoying myself in any way and content- he’s happy.   He was working in the back yard with a project he’s desired to begin working on since its begun to get warm.  He needs to tear down much of the deck work my Father did maybe 40 years ago so it can be replaced w/ wood that is not rotting and buckling making it very treacherous  for my dragging feet to walk over. Today was the beginning of that project for him and he was taking down the lattice work rails. I wanted to either be out there with him or inside accomplishing some things to help our house seem tidied up.

But I soon found myself laying on my bed crying. I don’t cry! {Seriously it’s just not my normal response} Yet I was and needed to quickly get over it, knowing that Tommy finding me crying would break his heart.  (of course he knows me all to well and would later see that I had been) I prayed, I ask God to please please help me focus on others and gain the strength I needed just to enjoy some home time w/ my wonderful husband.  I took some meds that I am prescribed for MS fatigue- this I apparently don’t do enough.. somehow thinking that taking the drugs is going to turn into something I have to do to get through the day, and THIS I DON’T WANT.  But I knew I needed the help today.

Because of your prayers, my prayers and the meds, things began to come together.  I was able to send a card to a dear sister who has recently lost her Mother.  I was able to reach out to some online who I know are hurting and needed prayer and a kind word.  I was able to make Tommy some nice ice tea and prepare him some food.  Several things got done.  I laid down thinking I would now be exhausted for the afternoon/evening. Right away  our niece and her precious son stopped in. He’s so cute see the pictures below:

Our precious Great Nephew Eli

After they left  I said to Tommy “put your shoes back on.. we’re going to get the groceries we need”  This was something Tommy had wanted me to do last night and I was unable.

While at the store Breanna (Granddaughter) telephoned to see if we wanted her to come over to spend the night before church tomorrow. Initially I told her that Granny was just not feeling so well and that we’d try to pick her up on the way to church tomorrow. Well she then reminded me with the sweetest voice “Remember- before you call the Dr. Call me because I’m your good medicine”

"Remember before you call the Dr. Call me- I'm good medicine"

 

Oh how we love that child. We called and picked her up on the way home from the grocery.  She’s tucked in beside me sound to sleep. And you know what? I’m at the moment feeling better and very thankful that I was able to accomplish some things today.

Many people who deal w/ chronic illness find that even talking on the phone is too much effort. I’ve heard people say that it’s way easier for them to type than to talk, and sometimes that is my situation. I cannot explain the fatigue associated with multiple sclerosis…. Except to say that the air itself is heavy.  Every movement even thought is done through weighted air.  So it’s not that one is tired or sleepy.. but just unable to move through that heavy thick air to do the things I want to do. And when I’m having a particularly rough time due to fever or the heat outside then it is even hard for me to sit upright.  That’s when I’m horizontal or sideways surfing.

That’s my story for today and I know some who will surely relate.

“Remember your word to your servant

in which you have made me hope.

This is my comfort in my affliction,that your promise gives me life.

Before I was afflicted I went astray,

but now I keep your word.

You are good and do good;

teach me your statutes, with my whole heart I keep your precepts;but I delight in your law.

It is good for me that I was afflicted,
that I might learn your statutes.
The law of your mouth is better to me
than thousands of gold and silver pieces.

Your hands have made and fashioned me;

give me understanding that I may learn your commandments.

Those who fear you shall see me and rejoice,
because I have hoped in your word.
I know, O Lord, that your rules are righteous,
and that in faithfulness you have afflicted me.
Let your steadfast love comfort me
according to your promise to your servant.
Let your mercy come to me, that I may live;
for your law is my delight.

Forever, O Lord, your word
is firmly fixed in the heavens.
Your faithfulness endures to all generations;
you have established the earth, and it stands fast.
By your appointment they stand this day,
for all things are your servants.
If your law had not been my delight,
I would have perished in my affliction.
I will never forget your precepts,
for by them you have given me life.
I am yours; save me,
for I have sought your precepts.

I am severely afflicted;
give me life, O Lord, according to your word!
Accept my freewill offerings of praise, O Lord,
and teach me your rules.
I hold my life in my hand continually,
but I do not forget your law.

I rise before dawn and cry for help;
I hope in your words.
My eyes are awake before the watches of the night,
that I may meditate on your promise.
Hear my voice according to your steadfast love;
O Lord, according to your justice give me life.”

Verses Quoted from Psalm 119 ESV

 

 

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View from my sofa

March 18, 2011 in Chronic Illness, Inspiration, Multiple Sclerosis, Scripture with 1 Comment

Limited perspective – Hope forever

My sofa

 

Sounds like an oxymoron. Let me assure you it isn’t at all. Because of a progressive disease process (multiple sclerosis), I’ve become more intimately acquainted with my sofa and less involved with the real world outside my house.  In so many ways I’m terribly disappointed because I just love life and being involved with people brings me great joy.

 

Because of the Internet and my interactions with people online my life has remained interesting and full of purpose.  Many of the people I’ve come to know and love I would not have known if I were still actively keeping up with two jobs and my pursuit of personal fitness.

 

No doubt life as I knew it has changed!  My view from my sofa is limited indeed. But the things that really matter, the fruit that is produced for eternity may actually have increased. “Jesus Christ is the same yesterday, today and forever.”

 

“The steadfast love of the Lord never ceases;
His mercies never come to an end; they are new every morning;
great is your faithfulness.

“The Lord is my portion,” says my soul,
“therefore I will hope in him.”

 

Either I will see healing in this flesh or when I am in His presence. Until then my desire is to respond to my circumstance in a way that brings Him glory and encourages others.  So many dear people are alone on their sofas or sickbeds. Many have no hope for a good day that allows them the ability to get out and do some of the things they enjoy. My heart aches for them and my prayers are for their encouragement.

 

It’s true- when we focus on others our own situation becomes less important. Philippians 2:3 “Don’t act out of selfish ambition or be conceited. Instead, humbly think of others as being better than yourselves.”

 

Before you call the Doctor ☤

February 21, 2011 in Chronic Illness, family, Inspiration, Multiple Sclerosis, My Story, Ourselves And Family, SparklesGlitter, SwitchingGranny's Stuff with 3 Comments

Most of you know that I have struggles with multiple sclerosis, having been diagnosed with primary progressive (not terribly progressive) ms since  2003.  I’ve been exceedingly blessed for the most part to continue enjoying my ability to walk and live and full life.

Yet I do have particular issues with fatigue among other symptoms.  Most recently I’ve endured more difficulty with this paralyzing fatigue than usual.  Not sure why but I have some fever and heat of any kind really slows me down.

This school year I’ve committed to having my seven year old grand daughter dropped off at my house so she doesn’t have to ride along in the bus her Mother works on as a special needs attendant.

I offer my little Breanna aka “SparklesGlitter” a snack and then sit with her while she does her homework.  If she completes this before her Momma comes to get her she gets some free time for play or dancing or whatever. I’ve been posting almost a picture each day in an album on facebook.

On my worst days just getting myself up off the sofa and dressed having a healthy snack prepared and just being upright for her arrival requires huge effort on my part.

Knowing that I have the opportunity to make a lifelong impact on this precious little one and minister the love of God to her is incentive enough to make me  push myself beyond what I might otherwise not have been able to accomplish.   For Breanna this is a valuable time of one on one attention that not only gives her great memories of me; but also provides routine and good study habits. Its a win-win situation. Only once have I had to remain on the sofa in my pj’s during our visit.

Lately I’ve told Breanna “You have no idea how good your visit is for MeMaw- I was very weak today and on the sofa; yet seeing you has made me feel so much better.”  Then I’ve said “You, precious one are good medicine.”

So her new saying/ song is “Remember before you call the Dr.- call me, because I’m good medicine.”

Gotta love my little ballerina!

Okay here’s my brain after 5 years

February 4, 2011 in Chronic Illness, Multiple Sclerosis with 2 Comments

I’ve just endured a wait for results from my most recent brain MRI.  Knowing that God’s Word tells me  in 2nd Corinthinans 4:18 “Not to look at the things that are seen but instead to look for the things unseen; for the things seen are temporal and the things that are unseen are eternal”

MRI of my brain 2006

MRI of my brain 2011

It’s been a huge relief to see that my MS lesion load has not seemed to progress in these last 5 years!

MRI of my brain in 2006


MRI of my brain in 2011

So, I just wanted to share this good news.Studies say that lesion load on MRI have no relevance on disability in MS.
Yet,having the virtual assurance of no big changes is sure encouraging when it’s MY brain!

Online as in eternity I’m whole and well

October 15, 2010 in All Things Tech, Church Related, Inspiration, Multiple Sclerosis, My Story, Scripture with 1 Comment

"iMacandRosesinVase"

We all know that things aren’t always as they appear online. And I for one am grateful for this. Because since my diagnosis of multiple sclerosis in 2003 my journey in this life has taken a detour that I’d never imagined. I surely have more days that I’m physically horizontal than upright. Yet from your perspective I’m either out and enjoying you personally or online fully whole. Because you don’t have to see the actual real- time picture for our friendship to grow.

"LayingonSofawithLaptop"

I’m a lover of people; and without daily interaction with others I would surely be overwhelmed with depression as well as the issues of living with a chronic illness.

Yet life is full and exciting.

I’m so glad we have the technologies for interaction in New Social Media that allow me to have interesting and meaningful conversations with you from my sofa! I’m still making friends that are genuine. I’m still able to serve in my local church even while in my pajamas. I’m able to travel the world. And most importantly I’m able with the direction of the Holy Spirit to make an eternal difference right here right now!

What are your ideas on how we can help others who are chronically ill or home bound take advantage of this new medium of communication?

Those who look to him are radiant, and their faces shall never be ashamed. Psalm 34:5

You have done many miraculous things, O LORD my God. You have made many wonderful plans for us. No one compares to you! I will tell others about your miracles, which are more than I can count. Psalm 40:5

Hate Re-Runs

December 3, 2009 in Multiple Sclerosis with 2 Comments

Another episode of Fatigue

My biggest struggle with Multiple Sclerosis. And I know I’m not alone because this is the #1 symptom reported by others with MS.

But when enduring another episode I want to cry out for the old me. The one who could wake up at 5:00 and get my house in order then go drive my school bus and then meet clients at the YMCA for personal training by 8:30 and keep that going till leaving the Y to come home and walk my dog about 1:00 before driving my afternoon bus route. Then I’d come home.. make dinner and either go out racewalking or go back to the YMCA to teach a spinning class. In the midst of that excitment I managed to enjoy fellowship with folks and keep my house in order. WOW

Now there are days that I am unable to even get up and dressed before noon.

I spend entirely too much time horizontally. Plenty of days I don’t even take the anti fatigue meds prescribed for me because the fatigue is beyond pharmaceutical help and every day I go without meds causes my tolerance to be less so I’m able to benefit on the days that they will indeed help.

I think of seeing folks just yesterday and knowing that they saw me out and looking good. Yet they don’t see me on “these days”.

No doubt this is a depressing post. But sometimes it feels better just to share my burden, knowing that there are dear folks lifting me up in prayer.

I can close with hope. Because when I’m down and unable… He is always more than able.

Psalm 34:3
O magnify the LORD with me, and let us exalt his name together.

Psalm 121:4
Behold, he who keeps Israel will neither slumber nor sleep.

Jeremiah 31:25
I will refresh the weary and satisfy the faint.”

Weakness or Fearlessness?

October 9, 2009 in Inspiration, Multiple Sclerosis with 2 Comments

You know some how we’re conditioned that to use a crutch is a sign of weakness?

But Tommy has been encouraging me to use the cane more often as he knows I hesitate to do things with the family that will require much walking, especially in the dark.

In stores I always grab the cart because it gives me the security I desire along with something to lean on.

But yesterday when we went to the Fall Festival and I took the cane (it is a special cain as it was not only my Father’s but his Father’s before that)

I was amazed how much more secure I felt walking in the crowded street at the fall festival.

I’ve decided that a cane is something to be thankful for. Now maybe I’ll have an artist friend (Robin.. Robin) paint something pretty on it because it is just plain wood.

So if you see me with a cane… just know that I am choosing to add stability and fearlessness to my life.

Maybe I’ll encourage someone else that using a cane is not a bad thing but an added help… and maybe life can be enjoyed more w/o being worried about missing a step all the time.

Just How it is

September 28, 2009 in Multiple Sclerosis, Video with 0 Comments

I’m Just sayn’ Yes

September 11, 2009 in Inspiration, Multiple Sclerosis, Ourselves And Family, SwitchingGranny's Stuff with 1 Comment


I was paying attention in the 1980s and 1990s during the United States “War against drugs”. The slogan of course was Just Say No

I saw first hand people who ruined their lives by becoming addicts. Both with rereational illegial drugs and prescription drugs.

I was addicted to cigarettes for decades. The adults I was exposed to as a child were all alcholics. Every special occasion was celebrated by having drinks. And every evening began with “Happy Hour”. I had a few years of my adult life when I drank and did not have control over my drinking. Ultimately I was delivered from the desire to both drink and smoke.

But along comes multiple sclerosis and the multitude of symptoms that come along with it. (isn’t that what MS stands for?)

I have been in a battle regarding the use of pharmaceuticals since my diagnosis in 2003. There are drugs for the pain associated, the stiffness that can make walking difficult, drugs to help with sleep and the all important drugs to fight the paralyzing fatigue.

I’ve posted a picture before of my load of medications. I’ve fought to only take drugs when I felt they were really needed.

However my quality of life has become more and more difficult without the help of these tools.

My Neurologist has often said “Why don’t you take what actually makes your life better on a consistant basis?” It was because I did not want to be dependent upon pills to get through my days (and nights).

I am coming to the conclusion that I need these drugs. And to try to be the person who doesn’t need medication to get through the day is literally a dead end street for me.

Today I didn’t have the strength to get moving and ready to attend a Bible study that I was looking forward to. I’d been down with fever & fatigue for several days before finally enjoying a good day and a half.

Yet here I was again unable to accomplish those things required to be independent or even to do just what I was looking forward to.

There are several different drugs for MS fatigue. I find if I take any of them on a regular basis they don’t help much. So I have to switch around from one type to another. Yet I still didn’t take any on a regular basis.
I was only taking them when there were special things I needed to do.

At nearly eleven a.m. I took an amphetamine. By noon I was finally getting my shower and making the bed.

Ultimately I’ve gotten some things done around the house and feel some what accomplished.

Having the help of pharmaceutcals is a blessing. Who would want to spend days on end being “horizontal” when there is a way out? I’m no addict.. I have multiple sclerosis. So there! I’ve convinced myself.

And I’ve come to a new decision regarding taking drugs.. for me it’s “Just say Yes!”
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