A personal account of my dealings with progressive multiple sclerosis. And my battle with trigeminal neuralgia and the brain surgery that stopped the pain!

Saturday, March 14, 2009

A Middle of the night plea for prayer




I posted this on twitwall late last night (or early this morning) yet thought I'd move it to the blog. I was desperate for prayer and that was the quickest way to get to my those who might still be up and able to pray.

Here goes:

Needing some prayer support.. discretion advised Edit
Most know that I deal with some pretty chronic bladder and urinary tract issues from the multiple sclerosis. I've just gotten through a mini series of bouts with these conditions which give me discomfort and more importantly a rise in body temperature which slows all nerve conduction and makes symptoms that are normally just background noise very up front and noticeable.
One rare and difficult problem I have dealing with this neuro-genic bladder is that there will be times that it won't empty. It rarely empties fully and this is one reason I am so prone to the infections.
So I self catheterize 2-3 times per day as needed to allow all urine to be moved out of my bladder.
Yet there are these occasions when I have spasms.. the feeling like i am constantly full of urine and in great need of voiding. I can sit down to void and only go a tiny bit. But there is no sleeping because the urge feels so intense and the painful spasms with it make it impossible to sleep.
I am grateful this does not occur often. But right now seems a bad time as I am on a slight dose of steroids from my previous bout of not getting better and becoming so weak. These drugs play havoc on my sleep anyway. Now with the spasms I am asking prayer for sleep tonight.
I've taken some medications to help with the spasms. I honestly don't know what else to do but to pray and ask for your prayers as well.
I've had a great and productive day. Until about an hour before reclining for bed. Now it is just amounting of potty sitting or getting in and right back out of the bed.

I will use this time to pray intensely for those whom I know that are suffering a much worse fate at this time in their lives. I will seek God and ask Him to encourage your hearts as you serve the kingdom by praying at His throne in the flesh.

Love to all

Friday, March 13, 2009

Coping with the truth



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.

Thursday, March 5, 2009

Horizontal

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.

Keeps me Humble

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

Trip to a Specialist

Monday a friend drove me to Nashville for an appointment with a Urologist who specializes in MS urinary issues.

Honestly I knew that most of my urinary problems weren't things that could be "cured". But I needed the opinion of a Specialist to confirm that the self treatment regime I'd been carrying out is acceptable for my condition. I wanted to know how to have the best quality of life that I can even with the problems MS causes me.

The local Urologist I'd seen .. the fellow who got me to begin self catheterizing seemed to give up on me. I felt that he felt my case was hopeless and had no solutions for me. My final visit with him was when he told me that all people with MS deal with fevers! NOT

So I'd been putting off going for well over a year. It is so much trouble to find a Dr. that is recommended and is covered by your insurance etc. I just dreaded it. And when feeling well.. it is the last thing I think of. Yet when I come down with a UTI and the problems associated with it, I know I should get some help- yet at those times I am too ill to deal with it.

I'd say that urinary problems are one of the biggest problems that my MS has caused me

Life as I know it

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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About Me

My photo

Love Jesus! Mac Enthusiast! Love all things tech!

Married to high school sweetheart for 42 years! 
Multiple Sclerosis tries to get me down. 
Previous Trigeminal Neuralgia sufferer-successful MVD in Nov of 2006. 
Mother of 2 grown sons. GrandMother
Gardener, Twittering Lady.
Podcast lover. Previous fitness instructor.. previous Childbirth educator, previous school bus driver, previous racewalker.

Lots of previous.. but unending future! Gifts: encouragement, helps, discernment. Lover of People.

Recently my youngest son 33yrs old- (now 37)  was  diagnosed with early onset Parkinson's disease- this is the toughest road yet. But by God's divine hand- we'll survive. 


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I am exceedingly humbled that He knows me by name and actually died that I might live. And then He sought me out! This is joy unspeakable.

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Did I mention that I had an uncle named Steve ?