Tag Archive - multiple sclerosis

A Rant In Weakness

July 10, 2009 in Inspiration, Multiple Sclerosis, SwitchingGranny's Stuff with 4 Comments

Yes, last night’s post might have looked like my “goodbye” to this world. But it wasn’t! I was just my expressing my desire to be free from this flesh and present with my Lord.

And it is when I’m sick that I feel the most desirous of my eternal home.

Here is the deal that has me down:

Its having to give up on things that I so want to participate in. I’ve mentioned before how difficult it is to be undependable where I can’t even count on myself!

A few months ago I lost a $50.00 deposit for a weekend retreat that I was looking really forward to attending, because illness made it impossible for me to attend.

And now I’m looking at this S’mores & More family weekend. I really want to go. We’ve invited the Grandkids. I can’t imagine not being able to participate.

Right now I am just praying my heart out that I will be well enough later in the day to pack and get ready.

In less than two weeks I’ve been entirely blessed with plane tickets to spend a week with some precious online friends in Texas. How I hope and pray that I can count on that.

So I get a choice.. ultimately should I just give up on making plans and sit here without any excited expectations around the corner? Or should I continue making plans with the knowledge that there is a possibility that it won’t work out? I figure I should keep on hoping for the best and count on being able to do these things.

“You are looking well”

May 6, 2009 in Inspiration, Multiple Sclerosis, Ourselves And Family, SwitchingGranny's Stuff with 0 Comments

It has never been my desire to place the spotlight on myself especially regarding problems of any kind.

My Father was one who never had anything except kind things to say to folks. So maybe I learned from him that to complain or present problems is not what pleases people and therefore is not acceptable.

Yet, since becoming a member of the family of God I have a Father who tells me to share my burdens with my brothers and sisters. To reach out for prayer. Knowing that He has instructed us to hold up one another in prayer and thereby minister encouragement to the body of Christ.

So I’ve wrestled regarding communicating personal needs while living with a progressive disease process.

I began answering positive saying “I’m great thank-you”. Yet as difficult days became more common I would say ” I’m very well today thank-you”. When having to answer the “how are you” question during a rough time I am nearly torn in pieces when forced to say “not too well right now.” Boy that hurts.

Ahhh but what hurts? The fact that I am not making you happy with my words? My words will never be what brings happiness or not to anyone. That is placing too much importance on myself.

Less of me… More of Jesus!

My heart is to encourage you. And if I respond with a thankful humble heart, giving all glory to God, good days or bad, I can let Him encourage you.

And to let you know that if you are seeing me- then I must be having a pretty good day. Because I’m not out there for you to see for the most part on the bad days.

So many of the symptoms of multiple sclerosis are really invisible to most folks anyway.

Yesterday for the sake of the blog I rounded as many of my prescribed medications as I could find and took a picture of them.

Not for sympathy but to validate the fact that even if I am blessed to “look well” I’m dealing with lots of symptoms that aren’t visible or that require pharmaceuticals to keep under control. Thankfully I don’t take all of these meds every day. But they’ve been prescribed for symptoms related to multiple sclerosis. (except for the natural hormone replacement I have compounded and take every day).

Here is the picture that speaks volumes for Granny… a woman who didn’t take hardly a pill a decade ago:

Yo-Yo

April 23, 2009 in Inspiration, Multiple Sclerosis, Ourselves And Family, SwitchingGranny's Stuff with 2 Comments


Like a yo-yo, honestly that is how I feel about my days. One day I am out
and about accomplishing all the wonderful things that are on my agenda. The very next day I cannot get the strength to even be vertical.

I looked up how yo-yos work and found that there are three different kinds of energy needed to make the whole thing happen:

#1 Potential energy—because it’s a certain height above the floor.

#2 Kinetic energy of movement—because it’s moving up or down relative to the floor

#3 Kinetic energy of rotation—because it’s spinning around.

And honestly my life consists of all three types. Yet on the “bad” days I’m
just not maintaining #1 which would compromise #2! Now #3 shouldn’t ever be too much of a problem because I am nearly always spinning out of control!

Once I get this figured out I will be sure to share my findings.

Until then I’ll just continue to hold tight and try to enjoy the ride!

“Although Jesus was the Son of God, he learned to be obedient through his sufferings.” Hebrews 5:8

Giving in?

April 15, 2009 in Inspiration, Multiple Sclerosis, Ourselves And Family, Scripture with 3 Comments

When you see me I’m having a good day. And thanks be to God I have plenty of great days.

But there are “those days” when you don’t see me. When my intentions are good and plentiful yet my abilities are not. It is always a battle when “those days” hit. They generally come on without warning. Initially it is an overwhelming perception that the air around me has become heavy. Every little thing becomes monumental. Just the regular activities of daily living seem like overwhelming tasks that I am unable to accomplish.

The “old me” (before chronic disease became a part of my life) still sees myself as lazy when I don’t follow through with my goals and plans. Especially if this inability includes simple things like getting dressed and getting the bed made and the laundry done. Or even doing simple hygiene things like washing my hair seems too labor intensive.

So I’m trying to get adjusted to the fact that I cannot count on myself to feel great from one day to the next. In fact I am having to realize that if the Lord Himself has allowed this affliction to continue, then HE will show Himself strong through me and obtain glory through it all.

Am I giving in when I realize I cannot do the things that I’ve committed to doing? When I stay in a horizontal position most of the day? When I let my husband or family down regarding plans we’ve made and I can no longer fulfill?

No- I’ve decided not. I am enduring this trial to become stronger in Jesus and to somehow allow Him to show His grace and mercy through me.

No I am not giving in. I am yielding and trusting and praying for a way that this will be used to minister compassion towards someone else who struggles with some of the same “can’t depend on myself” issues.

Coping with the truth

March 13, 2009 in Multiple Sclerosis, SwitchingGranny's Stuff with 0 Comments

Low burden of white matter signal abnormalities: My MRIs

I’d love to say that the worst is behind me. (No not my ever gradually spreading rear side); but the long couple of months of virus’s, infections, and disabling fatigue.

Multiple Sclerosis is so different for everyone. And even though I’ve been diagnosed since 2003 and very likely been dealing with this disease process for a few years longer than that, I still tend to be in denial some. Because when I am not ill or hot I don’t have many issues with mobility which is generally what one thinks of when hearing MS.

And I have this pride or self preservation hope that this isn’t getting me down or gradually reducing me to less physically than I want to be.

Tuesday I visited my family Dr. because I wanted to know if I was over looking something besides MS bringing me so much fatigue and hence depression. Like say a thyroid condition or even some mono.

I told him I didn’t want to miss something treatable because I happen to have this label of progressive neurological disease.

Well he sat me down after listening and going thru my e-room records from two weeks earlier. And he said “I think I know what is going on and I do believe this is part of your Multiple Sclerosis compounded with the fact that you have been knocked down with several illnesses recently- I think your immune system has just been run over and we need to give you a jolt” He knows I hate doing any steroidal treatments because of the side effects and the fact that they aren’t proven to do any long term good.

However I was ready to do nearly anything to begin getting some strength back. To be able to count on myself and be able to do not just the things I need to get done as activities of daily living.. but also to resume doing things I enjoy without having to pay with an entire day in bed after.

Apparently my Vit B levels were low as well. I did not want to do IV steroids or a dose pack that begins with high levels of steroids and then titration down. So I got a shot in the bum that included some B12 and steroids. And am doing a very low dose of oral steroids for 10 days and taking a prescription B12 vitamin long term.

Tuesday I did not really feel better. Oh I was better to get ready and get to the 8:00 am Dr’s appt. And did take Breanna to dance class. But as usual I was completely on the sofa by the time sweet Tommy got home from work and did not do anything more.

Wednesday I stayed on ECM (energy conservation mode) the entire day), as to be rested up for a dinner/seminar provided by our local Tri-State Multiple Sclerosis Association

Thankfully I was able to attend and enjoyed myself. In fact Wednesday night after getting home I was really wound up and had some trouble sleeping. One pharmaceutical tends to lead to another. So sleeping pills were necessary.

The title of this MS seminar was ” How to know if my MS is worsening and what to do about it”. A Dr. Berry Singer from the St Louis Comprehensive MS center was the speaker. I think some denial was removed listening to him. He had us consider how far we were ale to walk 1 year or 2 years ago as compared to now. Well.. remember I was a racewalker at one time. And last year I was still enjoying riding my bike and walking my dog through the neighborhood. Now I must utilize pushing the grocery cart when just trying to go to Walmart. Now I have Tommy drop me at the door of the store before he parks. When I walk my dog it is only enough for her to relieve herself and then we return home. So things have indeed progressed.

Dr. Singer has a nice website that is not particularly sponsored by drug companies like most. In particularly he has a nice short animated video on the front page I think is good.

Anyway to keep this blog from being a book. I just wanted to say that I am feeling more like myself right now. And praying to continue to have some time of constant “up” time.

It is so difficult to be self focused. There are so many folks dealing with much more serious things.

And what really convicts me, is that I know my adversary; the devil walks around seeing who he can destroy. And although I am confident that he has no claims no my soul and cannot take God’s free gift of salvation away from me. He can steal my joy. And the joy of the Lord is my strength and my testimony. I rebuke you satan in the mighty name of Jesus. Lord keep me meditating upon Your word and those things that are lovely true and of a good report. In the midst of this perverse and wicked generation I pray You receive the glory due your Holy Name. I pray that my response to the trials of this life are acceptable to You and are used above all else to bring others in to the knowledge of Your saving grace. Oh how I love you my Lord.. the Lifter of my head!! Thank you for praying saints and the comfort and healing of Your Spirit. Amen.

Keeps me Humble

March 5, 2009 in Inspiration, Multiple Sclerosis, Scripture with 0 Comments

Always was very thankful for good health. I love life and people. And most of all I have absolute confidence in and passion for my Lord Jesus.

There is this thorn in my flesh. Multiple Sclerosis! Although I’ve not been disabled much regarding mobility (only when I’m hot from either external heat or an internal rise in temperature), I do face “issues” from the MS that cause my good health to be like a yo-yo.

When I am feeling good I am great. And love every minute of it. Yet I can be shot down in a matter of hours.

There is “background noise” that I deal with daily. The fatigue, memory problems, urinary retention to name a few. I deal with these things with medications and regular self catheterizing.

There are things that aren’t so common like episodes of migraines or spasticity.. also dealt with mostly pharmaceutically.

The urinary retention is a big problem for me. Because if my bladder isn’t emptied all the way it is a breeding ground for bacteria. Yet self catheterizing no matter how clean the technique or sterile the equipment, catheterizing introduces bacteria into the urinary tract.

Thus I’m really prone to urinary tract infections. These come on so rapidly. I don’t always know what I’m dealing with right away. Because my first symptoms are extreme weakness both physically and emotionally. I’ll feel like I’ve suddenly gotten really lazy and so easily weepy. Then once the fever hits I become dizzy and even weaker from the rise in body temperature.

So this is very difficult for me. I just hate being on my back. And I hate to complain. I desire to be well and fully serving my God. And I know that He can get glory even though I have this thorn in my flesh. He shows His strength when I am weak.

This is likely a warfare with satan wanting me to be discouraged and unfruitful. And I admit I do get discouraged. But it is only because I become weary physically. I do not become weary spiritually. By His mercies that are new every morning and by HIs grace I am kept hopeful. I know the ultimate end. And in the mean time I know that there is healing in His wings. He is able.
And if I do not find healing while on this earth, I will still be fruitful. I can still encourage others. I can still fruitfully serve Him.

satan has no claims on me…. I’m under the shed blood of Jesus- redeemed and awaiting my reunion with Him.

My help comes from the hills from the Creator of heaven and earth.. who was and is and is to come.

Amen

Horizontal

March 5, 2009 in Multiple Sclerosis, SwitchingGranny's Stuff with 0 Comments

Portrait by Breanna

One of the biggest issues I have with multiple scleoris is that I am unable to depend on myself. Good thing I am a Christian and can consider less of me and more of Him my goal. Otherwise I’d be so frustrated.

The other huge problem I have is that dealing with a chronic illness makes me self involved. The Lord knows my desire is to be selfless and a servant to others.

I blogged about my issues with urinary tract infections last week. And the most recent one caused me to feel I was going down hill quickly. Like a train on the back side of a mountain. Faster than I could keep up with. And my back was aching along with chills & fever. So I emailed a physician friend and of course she suggested that I get to the E-room to be sure it wasn’t a kidney infection that could get into my blood stream and be hard to treat. (it was Sunday morning)

So we reluctantly made the trip to emergency. It was a better experience than I’d anticipated. Nice folks and not an all day affair.
My temp was down at that time. My urine came out showing very little problems. My blood work was fine. Yet I was clearly in pain and miserable. They ultimately did a cat scan to check for a kidney stone. Nope

But they decided that since I take antibiotics prophylactically, and had indeed taken 3 cepro last week. It is possible that an early infection wouldn’t show up. So they are treating me like it is a uti that was heading towards my kidney.

Who knows.. makes me wonder sometimes if I should give up trying to find out why I am down when I am down. Just treat when I need to treat and wait to get well again.

My symptoms were so bad I had to also take pyridium. And it helped. By Tuesday I felt well enough to take Breanna to her dance class.

But that was it. Since then I’ve been horizontal on my sofa. Sad but true. How desperately I want to have energy and strength enough to just do things around the house. Yesterday I tried one of my amphetamine pills for ms fatigue. No help at all. Fever off and on.

Can’t do much more than lay with my precious macbook on my lap. And lots of praying because besides needing it myself.. I can serve the the Lord and others by engaging with my Lord and the privilege of prayer that He has given me.

Hoping to present a better report soon.

Unpredictably Frustrating

March 5, 2009 in Multiple Sclerosis, Scripture with 0 Comments

Early after my diagnosis of multiple sclerosis in 2003 I created this blog. Yet I’d never posted!

Seems like most of my posts had gone to my online journal with MSIF

And I’ll keep posting to the MSIF site because it includes an online community of folks with multiple sclerosis that I want to stay connected to.

But there are things to share here too.

The most unique thing about multiple sclerosis is how it differ’s not just for every individual who has MS; but that each day for me is completely different from the previous.

I cannot count on how I will feel from one day to the next.
My diagnosis is not the more usual relapsing remitting MS. I’ve been told that I deal with primary progressive MS.

So besides the times I’ve awakened with optic neuritis, I’ve never had a completely new symptom pop up that goes completely away. But I can sure feel great one day and be nearly bed ridden the next.

For example, yesterday I felt wonderful. Weather-wise we’ve encountered a cool front. At least compared to the weeks of 90 degree days. Yesterday it was low 80s! Tommy and I hand waxed both cars! Then I did things around the house and went and got some groceries. Made up some soup. And had our Granddaughter stay the night.

Today however I am unable to accomplish anything productive.
Just barely made it through the morning visiting with our Breanna. No church! Tons of things I want to do to prepare for our upcoming trip to Michigan. Yet, here I lay with my macbook on my lap. Blogging horizontally!

Unpredictable! Frustrating.

Two very descriptive words for Multiple Sclerosis.

I’ve never wanted to consider myself sick. In fact I’d be the first to argue that MS is not a sickness, just a progressive neurological disorder! But when I’m fatigued to the point of being in my bed, I begin to think that maybe I am sick!!

Next post I pray will be more uplifting.
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