Yes a Thorn in my Flesh yet His grace is sufficient!

Hate Re-Runs

2009-12-03T10:47:00.003-06:00

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?

2009-10-09T15:22:00.003-05:00

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.

Thank You for my Husband

2009-10-05T11:57:00.003-05:00

I fell in love with this man when I was in 8th grade. Really! He was from a close knit family who literally lived on the other side of the rail road tracks. My parents weren't happy. #1 because I was too young for love and #2 because of his social economic class-- concerned I could never be happy without a fellow who would have lots of money to care for me.

He left town the day he turned 16 to join the Merchant Marines. My heart was broken. But while he was away I did all l could to help him remember me. I bought his high school pictures and sent them to his Mother. (always good to get on the Mom's good side)

I wrote him letters regularly. (not even realizing that he was pretty much unable to read.. a fellow friend in the Merchant Marines seamanship school read my letters to Tommy and wrote letters back to me that Tommy copied and sent)

Ultimately he returned home before shipping out. I will always be grateful for an older man (maybe he was 30 LOL) who told Tommy that this was not the life he should peruse. He told Tommy that if there was a girl back home who loved him to return and make the most of it.

I was a sophomore in high school when Tommy came back. And he suddenly looked so mature and grown up.

We ran away to be married on Easter Sunday of 1973. Of course no judge in his right mind would marry us. We ended up hiding out in a cave under High Knob at Shawnee National Forest. We slept in his car at night and finally had to sell his spare tire to get $5.00 for gas and the oil that his car seemed to use more of than gas.

When we ran completely out of money... (about 3 weeks) we returned to our home town. I called my parents and boy was I in trouble. They said they would not sign for us to be married ever. And my Mother being the director of Planned Parenthood at the time only wanted to get me on the birth control pill.

Tommy found a job at a tire shop. I slept in his car (hiding) in the tire shop parking lot during his working hours. Sometimes I ventured to a "head shop" called Folz City in downtown Evansville. (walking.. remember I was too young to drive)

Tommy's boss gave him a couple weeks pay in advance. So we found an apartment. I remember well it was $25.00 per week yet we paid $30.00 for 5 weeks to get our required deposit paid for.

Once settled (it was a furnished apt) I wanted to get back to my high school. I walked there one day and they told me that unless I was in school the following week they would arrest my parents for child neglect. I had to be in school either living at home with my legal guardians or married.

So I called my Mother and with the legal action coming down on them and their seeing how determined I was they decided to go and sign a waver for us to be married.

We had a wedding at Tommy's Grand Mother's house. I have no pictures as the only one who brought a camera forgot her film!!

My parents showed up quite upset.

Long story short.. our love has continued and grown. My parents ultimately feel in love with Tommy as well. After three years we had our first son and just a year later our second.

Tommy has been my best friend and closest family for my entire life.

I do not regret our early marriage. Because had I waited he may have not been available.

And now 35 years later.. and dealing with chronic illness, I've found this dear man to be so selfless and giving that I am just falling in love with him more.

When I was twenty one years old I got saved after reading a book titled "666" by Salem Kirban. It wasn't for a couple of decades that Tommy also was born again. And it is just recently that he is beginning to desire even a closer walk with Jesus.

"The rich and poor meet together; the Lord is the maker of them all" Proverbs 22:2

"Let thy mercies come unto me, O Lord, even thy salvation, according to thy word." Psalm 119:41

"Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost." Romans 15:13

Just How it is

2009-09-28T11:32:00.003-05:00

I'm Just sayn' Yes

2009-09-11T15:15:00.007-05:00

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!"

Bout to Burst

2009-07-21T13:10:00.007-05:00

All looks good for Granny's Big Trip to Texas tomorrow. To spend some time with folks that I so admire. A complete treat. Wanted to mention that although there have been some serious fervishly fatigued days as of recent. My health has been good enough to get things together for this really unique and precious opportunity.

I know the Lord's hand is on the trip. And my health is indeed in His hands. Some one commented on my last post that I should spend more time focusing on the positive rather than the negative of life. And normally that is my outlook. God knows that weakness drags one emotionally low as well as physically.

And then He decided (through the kindness of others) to allow me this exciting visit. So I am trusting that He'll also allow for the good health needed to enjoy every minute of it. Thank You Lord Jesus.. Thank you Neal & Cali and Thank You Tommy for allowing me to leave you for a week just because you love me. Thank you friends for taking time to pray!

Oh let us magnify the Lord together. Let us exalt His Name for He is Worthy of our praise!

I'll keep you posted. Most likely from my switchinggrannysstuff.blogspot.com

A rant in weakness

2009-07-10T10:25:00.004-05:00

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.

I want to leave memories of great joy

2009-07-09T22:02:00.003-05:00

There is a time for everything,
and a season for every activity under heaven:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.
Ecclesiastes 3:1-8

You don't know what will happen tomorrow. What is life? You are a mist that is seen for a moment and then disappears. James 4:14

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart. Hebrews 12:1-3

For I am already being poured out like a drink offering, and the time has come for my departure. I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.
2 Tim 4:6-8

A good name is better than precious ointment; and the day of death than the day of one's birth. Ecclesiastes 7:1

Whom having not seen, you love; in whom, though now you see him not, yet believing, you rejoice with joy unspeakable and full of glory: 1 Peter 1:8

I'm not sure why I am consumed with the knowledge as of recent that my time is at hand. But if my Maker is allowing me the ability to be aware of my departure from this clay; I must say with a pure heart that it is only by His grace that I will be counted worthy to stand in that day.

May my short time on this earth allow for some eternal weight of glory.
And may the memories I leave bring glory to His Name and assurance to those who are yet lost and seeking to be found.

I desire to be with Him... but He may have work for me yet here. My days are in His hands and my salvation is sure. Because of what He has done- All is well with my soul.

Even so Come Quickly Lord Jesus

"You are looking well"

2009-05-06T15:27:00.008-05:00

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

2009-04-23T10:49:00.006-05:00

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?

2009-04-15T13:27:00.003-05:00

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.

About the MVD surgery I had in 06

2009-04-07T09:05:00.002-05:00

This seemed to be a little easier than the surgery I had.. but it was the same one. (my anatomy was somehow different so it took 5 1/2 hrs) But it was successful for me. In fact I've seen Dr. Casey speak at the TNA national conference in Michigan. Dr. Peter Konrad at Vanderbilt did my surgery.

A Middle of the night plea for prayer

2009-03-14T10:41:00.003-05:00

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

Coping with the truth

2009-03-13T06:51:00.002-05:00

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.

Horizontal

2009-03-05T19:58:00.002-06:00

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

2009-03-05T19:58:00.001-06:00

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

2009-03-05T19:56:00.000-06:00

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

2009-03-05T19:55:00.001-06:00

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.

Hurricane winds on the way home from conference

2008-09-14T19:01:00.000-05:00

Wow.. our ride home was eventful. We've never experienced a hurricane in Indiana. This was remnants from Ike... but man oh man we couldn't believe it. We took a side ride to the overlook at Leavenworth, Indiana. And I shot this video of Tommy during a huge gust. We later saw that the eye held together all the way into Michigan! WOW:

Our room at the Dearborn Inn

2008-09-14T18:55:00.000-05:00

Thought I'd post some pictures of the awesome room we had at the historic Dearborn Inn:

Final thoughts

2008-09-14T18:36:00.000-05:00

This was a great conference. Going to post a bunch of pictures. Sorry they weren't of great quality as I used my iphone so I wouldn't disturb with the flash. TNA had a professional photographer there so I am sure the website will have great pics!

If you ever have a chance to attend a regional conference or a national one.. do it! This is important to meet others who have TN or atypical face pain. You get 1 on 1 time to talk with some of the world's most skilled Neurosurgeons and researchers.

We'll never regret a moment. And have met some friends we'll have for life! (I pray for eternity)

Spoke to fellow TN suffer's

2008-09-13T16:14:00.000-05:00

Early in today's sessions we listened to a Pharmacist discuss the pharmaceutical approaches to treating neuropathic pain. And the routes particular chemicals must take to hinder this pain. It is always amazing that opiates aren't particularly helpful in treating this pain. And TN pain responds to different anti epileptic drugs than say diabetes neuroptic pain. We heard about the types of drugs normally used and how they work and which ones have more adverse side effects than others.

I found it interesting in a summary that only 5% of patients find any long term good quality of life by treating their TN pain with medications.

And 70-90% find long term improvement from surgical intervention.

Today was especially interesting at the conference if someone was interested in surgical techniques for dealing with TN.

MVD (the surgery I had) is proven to be the most effective surgical approach. Less problems with lasting issues after surgery. But of course it is the most dangerous of the surgical approaches because it is the most invasive. There was some disagreement regarding the mortality from MVD but it was pretty much around 1 in 1000. (some said more.. some said way less) Dr. Janetta said that no one had died as a result of this surgery since 1979.. I am not sure if these are worldwide statics or US alone.

They ask for volunteers who've had surgical procedures and were pain free since. So I got to share my story this afternoon along with 6 others. In this group of people.. most are in pain and this is why they are here. Not many people continue their involvement with TNA once they've stopped having pain. So I hope we were encouraging to some considering their options. Mostly I hope I was able to promote the Lord Jesus and my trust in Him.

Tonight will be the gala and the end of the conference.

There was a really bad hurricane (Ike) in Texas last night.. and our travels will be affected by the aftermath tomorrow.

Watched 3-D MVD with inventor commenting

2008-09-12T17:49:00.000-05:00

Today was exciting as I watched a 3-D video of microvascular decompression surgeries with Dr. Peter Janetta (among others)! What a remarkable man. He invented the surgical technique that stops TN pain in its tracks for 90% of people!

Here is the link to the book written about him: Working in a very small place

I shed a tear thinking of the awesomeness of the surgery I endured just a year and a half ago! And how very thankful I am to have had success!

Anyway Dr. Janetta is convinced that hypertension, diabetes, and even Parkinson's disease are all caused by vessels compressing cranial nerves. Amazingly he said that he has already treated these conditions with MVD surgeries. WOW Fascinating for sure.

Tommy and I met so many folks today who have dealt with this monster and more. Some have had more than one MVD. Some have had other procedures including Gamma Knife surgery, balloon compression, radio frequency surgery and glycerol in injections. Others have found relief from complimentary medicines and procedures. One topic discussed today was Acupuncture for TN. We met a lady who is wearing a trial electric stimulation device which sends an electrical pulse to her neck and head when she begins to feel the pain of TN.

We've met many people who have had their lives nearly destroyed from the pain or from the "cure", the anti seizure medications that are supposed to dull the horrible TN jabs yet often dull one's entire mind in the process.

Then this evening the conference hosted a reception. The food was fabulous. I experienced my first chocolate fountain! Yummiest with pineapple!

Well exhausted and more updates and pictures coming tomorrow.

TNA Conference

2008-09-12T15:17:00.000-05:00

Scoop straight from the conference

2008-09-12T10:16:00.000-05:00

After introductions we had a very detailed, (not laymens terms) discussion on the science of pain from
Dr. Manfrrd Zimmerman who is from Germany.

Here for TNA's 7th national conference!

2008-09-12T06:43:00.000-05:00

We've enjoyed our trip to Michigan for the conference. Visited with friends in Cincinnati and stayed there one night then got here to Dearborn yesterday.

Registration for the conference begins in 1/2 hour!!!

I will try to post important news and maybe some pictures.

Heading to TNA national conference

2008-09-07T12:29:00.000-05:00

Well we're getting ready to pack up and go to the TNA national conference

This conference will be in Dearborn Michigan. We've attended the regional conference in Nashville previously. But never the national one.

I've ask people to pray as I consider this an opportunity to minister. So many folks who deal with unspeakable pain. Desperate and suffering alone. When they come together with others who have experienced this monster hopefully they feel less alone.

Some have considered ending their fleshly lives because they aren't able to tolerate this hell any longer. Some have lost marriages, friends, all of their hopes and dreams because of their intimate connection with trigeminal neuralgia.

So my desire is to be available for anyone who needs hope in the midst of their pain. I cannot stop their pain; but I can lead them to someone who can promise to walk through it with them and give them a future and a hope. I can be a living resource of hope for those whom MVD surgery is an option. They can ask questions about the surgery. And know first hand that someone has found relief via major surgery.

Tommy and I don't get many trips alone. We've been blessed with the Florida trip (a gift from precious friends); but we've most often got family traveling with us on that trip.

So we also look forward to the long road trip together. I'll pile up good podcasts and a few audiobooks and some music. We'll enjoy traveling together.

Our plan is to stop half way and visit with some friends who live in Cincinnati. Then spend the night there and head the rest the way to Dearborn the following day.

The conference was provided as a scholarship from the TNA. So we only need to provide our travel expenses and our room. We could not have afforded this otherwise. The hotel looks wonderful. Most meals will be provided.

I'll post more about the conference and some pictures soon.

My road to brain surgery and more

2008-08-18T15:19:00.000-05:00

Around the year 2000 I began experiencing episodes of itching in my left ear canal.

Really at the beginning that was all there was to it. And this sensation (like a hair was inside of my ear canal.. or more irritating a daddy long legs) was not intolerable. Just annoying and a bit weird to contend with. Thankfully my pinky finger nail was fairly long and I could scratch at my itchy ear when ever I needed to. However the scratching did not help the itch.

This would bother me off and on for a week or two and then disappear for sometimes months. Yet, when it returned it was always more intense and seemed to build from an itch into rather painful jabs within a few days.

Ultimately I sought the advice of a dear friend who is a nurse practitioner. She initially thought that my ear canal might be inflamed. Either due to some external bacteria or maybe just from my scratching. So she prescribed some anti inflammatory medication. I thought this helped because within days the sensation was gone.

Yet, again it returned within a month or two. And this time I called her and told her that this was really causing me discomfort. I had already begun wearing plugs when washing my hair, thinking that the water in my ears was causing swimmers ear or something.

We tried antibiotic drops. We tried sweet oil drops. I visited a local health food store and tried (that is not me.. but that is what I was doing with the candeling) So glad we did not burn the house down trying this dangerous trick!

After several visits with my friend *maybe a year or more later.. remember I would have months of remission in between times of pain*, she said that because we'd been treating a condition that has been chronically returning and worsening, that I should see an EarNoseThroat Dr. Yet she said she would not be surprised if they later referred me to a Neurologist. Because she felt this condition I was experiencing may be originating from my brain! Yet first things first.. I'd see an ENT.

My friend also explained to me that she was thinking that I might have a rare condition called trigeminal neuralgia. No way I could spell or pronounce this term.. I had never heard of it! She said that even though this was a diagnosis that would have to be dealt with for my entire life that there was good news; she said it is very treatable with anti seizure medication.

Wow.. Of course I did my share of interenet searches on TN while awaiting my appointment with the ENT. I honestly did not think my situation was like the horriffic condition that I was reading about. Often said to be the worst pain known to mankind. Yet everything I read described it as being jabs to the face. This was my ear!

I think I had to wait month or so to see the ENT. By then I had experienced another episode which really was much more painful. I wasn't sure if this was due to my studing the condition or what. But I was becoming rather frightened.

The ENT Dr. ruled out ear, nose, and/or throat problems. She said that this seemed like a condition called trigeminal neuralgia (wow my friend was right) and that although she could diagnose the condition, it needed to be treated by a Neurologist. But that treatment with anti seizure medication normally stopped the episodes of pain.

It was a long wait to see the Neurologist. But once I did he diagnosed the TN. He put me on an anti seizure medication. He ordered an MRI to rule out causes for this TN. He told me that often there was no cause. But due to the fact that I was only in my mid 40's and most TN was found in older folks, he needed to rule out serious things like MS or brain tumors.

The anti seizure medication made me really sleepy. But at first it really did stop the TN in its tracks.

When laying in the MRI tube I felt a profound impression from God that things would be found out from this test that would change my path in life forever. I prayed that it would not be brain cancer. As my husband's dear friend had just died from a long battle with brain cancer. I really knew nothing about MS.

I am not going into the MS details on this post because I have plenty posted about how I found out I had MS and its progression on my blog with MSIF.

But I did find out that I had multiple sclerosis soon after the MRI.

That was huge and life changing. Yet, the Trigeminal Neuralgia episodes I was enduring were becomming less responsive to the anti seizure medications. I switched between several different types. Sometimes my dosage was increased to the point that I was rendered nearly disabled from the side effects. We honestly thought in the first year after my TN/MS diagnosis that my MS was progressing out of control. Other medications proved impossible for me to tolerate. Some made me immediately very very ill. Like you have the flu. I hated them. And others did not help the pain. Others helped only when the doses were increased to the point that I was listless and felt like a zombie. They also made me really dizzy. I was a school bus driver and had to give that up.

Somewhere in my interenet searches during this time I met a young man on a TN message board who encouraged me to come to a support group meeting for TN that he was hosting in Kentucky. He said a Neuro Surgeon was going to be there to discuss surgical treatments for trigeminal neuralgia. I will always be glad I went.

Because besides giving me a great understanding of the surgical interventions for TN. He also answered a very important question for me. All the things I had been reading suggessted that TN associated with MS did not respond to any type of surgical treatments. But this Physician said that if my TN symptoms were "typical" TN rather than the more common atypical TN that folks experienced who had TN as a symptom of their MS.. then my chances of being helped by the surgery were the same as for someone who did not have MS.

I also learned that the MVD surgery was statistcally the most successful surgical intrevention for TN. And the only surgical option that was not distructive to the trigeminal nerve.

So I kept this Dr.s card and continued with my life. Adjusting to the diagnosis of MS and continuing to deal with increasingly painful and frequent episodes of trigeminal neuralgia.

Once the decision had been made, the neurosurgeon consulted, and the surgery date scheduled, my thoughts often drove me to near hysterics. I would think of the common phrase “I am having surgery – but it will be okay – It’s NOT BRAIN Surgery”. And of course my decision to undergo surgical intervention for the monstrously painful jabs of trigeminal neuralgia was indeed going to be brain surgery! This was the most frightening immediate future that I had ever considered. Thankfully the time between my decision to endure the MVD surgery and the actually operating day was only a little less than two weeks!

I had learned that this option was available for some people who met certain medical criteria, fairly soon after my diagnosis of trigeminal neuralgia, which I must add ultimately lead to my being diagnosed with multiple sclerosis. Yet at the time my thought was that however great the success rate for this procedure, I would not consider such an option unless every other means of controlling the pain had failed.

Only three years after being diagnosed I found myself calling the Physician’s Office for a consultation visit to see if my particular case of TN (including the fact that I had MS) might meet the criteria to benefit from MVD. I had already studied and studied the risks and the odds of success.

I tended to only endure the episodes of these incapacitating pain attacks two or three times per year. But the episodes would last weeks before going into complete remission for several months. I had been on anti-seizure medications pretty much the entire time since diagnosis, often increasing the dosages drastically when enduring an episode of these “jabs from hell”. I had tried at least 6 different medications to deal with my trigeminal neuralgia. Several I could not tolerate even for a few days because the side effects were very toxic for me. Other medications left me continually tired, and dizzy, and generally took myself as I’ve always enjoyed life away from me. I was slow moving slow thinking and much diminished on these drugs. Quite a trade off! Because even with medications the painful jabs were never completely eased during an episode. The only way I found I could deal with the TN was to do the anti-seizure meds along with antispasmodic drugs and nerve pills to calm the anxiety. During the worst of times I also took sleeping pills to try and get to sleep. For the complete dread of the next “jab” was paralyzing. The anti-seizure drugs are the only approved drugs to deal with this kind of pain. Good response from narcotic type drugs is rarely found with TN. And these anti-seizure drugs must be maintained at a certain level in your blood stream to be effective. Which meant keeping on the drugs to some degree even during the months of remission. Having to deal with the unpleasant side effects all the time, I saw my only way out to be that of surgery. Trigeminal Neuralgia tends to progress in intensity and frequency as the years pass by. I could not imagine the pain being more intense and actually surviving.

My last bout of TN lasted from mid August until the end of September 2006. By mid October I was making the call to the University Hospital doctor (out of state) that I had heard speak at a seminar 3 years earlier.

My first encouraging sign was that this doctor and the Hospital where he practiced were considered “in network” with my insurance company! So my appointment was made for Nov 9th. From the time that the appointment was scheduled until the day I saw the neurosurgeon I was diligently praying and doing my homework, putting together a multi-page questionnaire.

My husband and 85 year old Mother made the trip for the consultation visit along with me. After extensively questioning me the doctor said that I was indeed a candidate for MVD surgery. He felt very encouraged that I would wake and very likely never endure pain from trigeminal neuralgia again. I was checking through my questions to ignore topics that he had already addressed when he actually kindly took my papers and went through them one by one, even the things already discussed. He did not present this surgery as risk free. First, there are risks associated with any surgery with a general anesthetic. And second, there are possible complications from this particular procedure. Most present was the possibility of a CFS leak. Then the fact that the trigeminal nerve is very near the cranial nerve that allows hearing on the side of the brain that he would be working on. And the remote, yet awesome possibilities of brain injury, stroke, paralysis, and even death. He shared the percentages of complications and successes that he has had when doing this procedure. He said that this would require about a half a day in surgery and then one night in ICU and after that 2-4 more days in the hospital. Recovery pretty much in a month but the surgery tended to leave people with some fatigue for quite a few weeks after.

He said that this surgery was not particularly painful and that there would be IV narcotics while in the hospital and that most people went home with a simple prescription for lortab.

There are less invasive surgical procedures for dealing with TN, but they are all destructive to the nerve in one way or another. The MVD surgery is done to preserve and protect the nerve. TN pain is most often caused by a vessel compressing a branch of the trigeminal nerve. MVD seeks to find the compression, move the vessel out of the way, and then they pad the nerve. He told me that he used a Dacron felt type material to pad the nerve. This was good to know because the material I had learned about was Teflon and the problem of slippage was sometimes causing a successful decompression to later fail when the Teflon slipped or moved. The Dacron material was in no way slippery. He described it like Velcro. He said that within just a few weeks my body would have also “scared” it into place.

I did not want to damage the nerve and have the possibility of being numb or in continual pain of any sort. MVD seemed for me the only surgical option. And although surgery was invasive and carried risks, a lifetime of anti-seizure medications and the side effects involved seemed to me a more chronically invasive option.

So, I was sent to the hospital radiology dept for a high tech/thin cut MRI. The doctor wanted to see if the vessel could be seen on radiology and more so wanted to rule out any other physical reason for my TN pain. If this were caused by an MS lesion I would not be a candidate. However I already knew that TN associated with MS was not so typical of the TN I endured. TN associated with MS tends to be more constant dull pain and includes numbness etc. It also is often felt on both sides of the face.

While in the MRI tube my husband was scheduling my surgery. I was rather taken back when they told me that it was scheduled for just a little less than two weeks away! November 22nd. The day before Thanksgiving!

I came home sure of my decision. But once I got home and began planning I also became very terrified of the potential risks etc. I so dreaded the surgery. I wanted the outcome.. but not the experience. I was indeed afraid. I woke my husband a couple of nights in a state of sheer panic saying “I just cannot do this!”

My Neurologist in town who has treated my Multiple Sclerosis symptoms and Trigeminal Neuralgia medications for the past three years was not overly encouraging. I remembered him saying when I had a visit a week before the scheduled surgery “what if the TN pain never returns without the surgery”. I know that his schooling was not to deal with this condition surgically. I honestly believe that he was concerned for my well-being. He told me about a patient of his who benefited from a surgically implanted device that sends electrical currents when one has TN pain jolts. He said this patient was on considerably less anti seizure medication. And that this was a much less invasive surgery. So the fact that this was a decision that I was making was hard.

But, with prayer and actually re-listening to the audio tape I’d made of the doctor's consultation visit, I was able to remind myself that this doctor was completely confident and that this was the right decision for me.

We got to the hospital the day before surgery for blood work and an EKG and chest x-ray, plus tons of pre-op questions. We took copies of my living will and my desire to make my husband my power of attorney. This was an extremely emotional and exhausting day for both of us.

That evening my Mother, sister and two adult sons came down. I was terribly concerned about leaving my family for 4-5 hours in fear. So I fasted and prayed the entire day before. I just wanted to sleep well the night before and awake the day of surgery in peace. For the sake of my family I wanted to go to surgery in peace. I somehow felt responsible for their emotional well being during my surgery. My prayers were divinely answered. I slept like a baby and woke at 4:30 am with a 5:30 arrival appointment in complete peace. It was surreal. I still very much dreaded what I would have to endure, but I was not afraid in the least.

I teased my family telling them that what had kept me going was a plan that I was not yet committed to this surgery. My fantasy was to run away from the surgical holding area, cause a huge media frenzy and then show up a week later having written a book titled “NO HOLE IN MY HEAD”. Then I would have gotten out of the actual surgery with the bonus of being rich and famous! Apparently some hospital folks heard me discussing this plan with my family because when I ask to get up with my IV and use the rest room there was some hesitancy. I just told them that it would be all the more sensational with a blood trail from my pulled out IV!

Then one more thing I want to mention before the post surgery details. This was a teaching hospital. So the two hour wait between showing up at the hospital and the actual move to the operating room was filled with seemingly tons of doctors and nurses stopping by and asking me the same questions over and over again. I mostly remember being ask if I knew what I procedure I was having done and if I could describe it to them. A neurosurgery resident drew with a marker a line of incision behind my ear on my scalp. Everyone went over things I could expect etc. I turned to my husband and said “I wish I could see a Christian right now… I know you are a Christian.. but I just need Christians ”. Immediately a small black woman pulled the curtain back to my cubical. She said with a very beautiful smile “ How are we doing this morning”… and some how I knew immediately that she was a Christian. And I ask her if she was and she said “Of course.. God sent me to tell you that He loves you and that everything is going to be alright”. WOW I told her that I had just prayed for a Christian.. and she said.. I know… He knows! I will never forget her comforting words and smile. If it had not been for my husband being at my side I would be sure I’d dreamed the entire thing. I will always wonder if she was an angel.

BRAIN SURGERY

I don’t remember much at all from the operating room. I do not recall seeing my doctor there. I do remember commenting on how small the room seemed and I remember being told that these people worked well together in small spaces! They were trying to make light and being kind. I also think I remember seeing my MRI’s on the walls around me. That is it!

Before when I’d done my homework in preparation, I had found an actual manual including tests for Physicians who were learning this surgical technique. It was honestly more information that I had needed to know. I knew exactly how much precision they would take in positioning my body on my right side. I knew where I’d be taped. I knew that screws would be placed in at least three points on my skull so I could be placed into a “halo” type vice grip to keep my head completely unmovable. I had previously been really anxious about all of these things. But in the operating room I remained in perfect peace, having no concern for the things that were going to soon be happening to me.

I woke in what seemed like minutes. My neck hurt terribly… my head hurt… my eye hurt. I was nauseated. I hurt where an arterial IV was inserted. I had bladder spasms with the foley catheter. But it was over and I knew I could get through this postoperative time and recover. I was told very quickly that the doctor had come out and told my family that he found exactly what he was looking for and that he was able to fix it. All went well!

Surgery was longer than expected, 5 ½ hours. Apparently my vascular anatomy was such that it took a bit longer to get to the trigeminal nerve. But as my doctor told my family after surgery, he saw an artery compressing the underside of the nerve, just where he suspected from the verbal account of my pain. And he also saw the actual compression bounce back to good anatomical shape after lifting off the offending artery. He then padded the entire nerve branch. He also checked the cranial nerve that is used by the ear as the epicenter of my pain was in my ear canal rather than my face.

I stayed In the ICU for 3 days but actually had orders to move to the floor in just 1 day. But with the Thanksgiving holiday the hospital census was low and some units were closed. So a bed could not be found. I honestly did not care where I was staying at that time. The first 24 hours were particularly rough because of the nausea I had from anesthetic. And the fact that I was completely unable to sleep. I wasn’t sure if that was from the discomfort I was in or the fact that I had received IV steroids to keep inflammation down. But the time crawled. I so wanted to just get some time behind me so I could begin feeling better. I could not eat or drink without the nausea getting me. Ultimately they found a stronger anti-nausea medication that worked for me. Part of my discomfort had nothing to do with the actual surgery. I was just so entirely sore from being in bed so long and likely from the positioning during surgery. I felt I couldn’t turn my neck.

I had planned to write an account of my surgery to post online, as during my pre-operative search I tended to only see traumatic accounts. I made my husband promise to take my picture right out of surgery! I wanted to post an account that might be realistic and yet encouraging for someone else planning this surgery.

Some kind doctor removed the arterial line late the first night after surgery.. this was a relief. The next morning I got the catheter out. I am prone to bladder spasms upon occasion and they were just terrible and once I remembered to ask for valium I found relief. When the catheter was out I began getting out of bed to walk with assistance to the little bathroom in my ICU cubicle.

My family came in every couple of hours. I sometimes wished they could leave so I could just “be” without trying to “be okay” for anyone. I worked hard to be encouraging to them when they were in my room.

By day three I was eating and drinking some. I was moving my head around much easier. The pain in my eye diminished.

Day four I moved to the regular neurological post-surgical unit. I was up and about by then. Even walking the halls with my husband, but I honestly don’t remember this time very much.

I was completely blessed with a visit from a fellow from the TNA, person who also had gone through successful MVD surgery. He was stopping by on his way to visit family for Thanksgiving. He was a great encouragement to my family and myself. I will never forget his visit. I hope to do the same for someone someday.

On day five I was released from the hospital! The plan was to return in 1 month for a post op visit. And to have my sutures removed by a Physician in my home city in 10 days.

The ride home was 3+ hours. I honestly have no memories of it. I have asked my husband if we stopped and he said yes.. he walked me to the bathroom at a rest stop and that I did very well. I ask if I talked at all going home and he said no I pretty much slept.

I remember surprising people at home by how well I was. I experienced an ache in my head and neck off and on for 2-3 weeks. But it was a dull ache not severe at all. I found later that I would feel the pain if I’d done too much, so I used it as a monitor of my activity level.

I did not go out for a month, mainly due to the fact that it was the height of flu season around here and I absolutely did not want to contact a bug. Sneezing or coughing seemed horrifying.

Folks brought meals in and I was doing some cooking within 2-3 weeks. I did not spend the time in bed. However I did spend considerably time on the sofa.

We enjoyed a great Christmas. I had a couple of spells when I was afraid that I might have the dreaded CSF leak. But once it was just a migraine episode that wasn’t responding to migraine meds. (I get a 2-3 day cluster of migraines every once and awhile) I began exercising after Christmas. Someone blessed me with an elliptical trainer and I had a stability ball and some hand weights. I realized very soon that I was not yet ready for the abdominal crunch exercises, and maybe not even the light dumbbells. Because soon after beginning the exercises I had several days of excessive head pain upon bending down and lifting up or straining in anyway. A sneeze caused really awful pain. So I backed off everything except the aerobic exercising assuming that I still had some increased inner cranial swelling. I was just going to listen to my body.

It has been just over two months. I had one episode of what felt like TN pain about 6 weeks after surgery. This was devastating. I went to bed crying and praying. Oddly enough this pain was on the opposite side from where my TN pain had always been. But it has not come back and I wonder if it was just continued healing for the nerve after being so disturbed during surgery. Since my last episode of TN was in August and September, I feel encouraged that I would have already experienced an episode if I had not been “cured”.

I am so glad I made this decision. I know it is not the right decision for everyone. But when I compare my recovery to that of an abdominal hysterectomy several years previously, I must say that the hysterectomy was much more difficult to recover from, more painful and much slower to bounce back from.

The difficult thing was the time before my surgery, when I second guessed my decision. I became terrified at the possible complications that could ensue; I kept thinking that if I had a cancerous tumor the brain surgery option would be completely acceptable. But with trigeminal neuralgia I was concerned that I was doing something irrevocable for a condition that was not constant or life threatening.

The community of people online associated with the Trigeminal Neuralgia Association and the TN-L e-mail list were a great resource of information and direction for me. I also found a helpful site from the Trigeminal Neuralgia association that gave people places to post their experiences with MVD surgery, and this site included pictures!

I feel pretty much 100% recovered. Honestly I feel better than I have for a long time, just for the fact that I am not dealing with the effects of anti seizure medications.

My advice:

*

Pray Pray and ask to be covered in prayer.
*

Do your homework.
*

Choose a Surgeon who does MVD surgery’s routinely. Find out his percentages of complications etc.
*

Make sure that your Surgeon is careful to prove that you are a candidate and would not operate otherwise. Talk to other patients that they have operated on.

My Surgeon and myself:

And then pray some more.

I hope this story helps you with your decision.

This is not easy