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I was recently diagnosed with TLE (temporal lobe epilepsy).  I am actually thrilled to have the diagnosis.  I've been dealing with the problems it causes for almost 7 years now...actually come to think of it I'm a little over 7 years.  The reason it took so long is TLE doesn't always cause the big seizures - they are now called tonic clonic, not grand mal.  It can lead to that eventually, but usually causes other seizures.  In me, it was serious dizziness and balance problems. 

Anyhoo...I had gotten to the point where even a brain tumor would have been a blessing...anything to get an explanation and a possible solution.

The problem is now though, the medication.  The biggest side effect is that I'm losing my hair.  My problem and the reason I want prayer isn't that I'm going bald, it is the fact that it has started to bother me that I want prayer for.  I think I'd have been fine if I went from having tons of hair to nothing in a short time.  Just slap on a wig, no worries or see how you look completely bald and run with that.  As it is though, it just keeps thinning and thinning and now people are starting to notice it too.  I feel pathetic and horible that I'm starting to feel bad and self conscious about it.  I mean, good grief...it is just hair.  I have looked at wigs, found some cute ones...there shouldn't be a problem, how vain am I?!.  It isn't as if it is life threatening.  Get over yourself Sara. 

One actual problem that I could use prayer for though is possibly also medication related.  See, the medication I'm on has almost stopped the seizures.  I've had one since I was upped to the dose I'm on.  If I continued to have the seizures, my neurologist says they would cause dementia because of the type of epilepsy it is.  I have noticed memory loss and just less control over my intelligence.  My seizures ranged from very annoying to where I had to lay on the floor to keep myself from falling over and when I had a baby I had to go down the stairs while holding him on my backside or I'd have fallen and dropped him.  I would get the electrical depressions that come after a spike...they manifested themselves as serious serious headaches.  Having to hide under a blanket in a dark room after taking 4 Ibuprofen and needing hours for it to finally go away was getting more and more common.  I haven't had ANY of those since being on the medication, it is wonderful.  Anyhoo...there are other side effects that are bothering me.  I had a few days of unexplained sadness...I was just very down which isn't my norm.  I would be sitting there and suddenly realize I was crying.  I had no idea why.  That, and my arthritis is now worse and all my joints are bothering me more.  They did a test and my immune system is seriously overactive which could mean autoimmune disorder, and there is such a thing as drug induced lupus...and seizure meds do sometimes cause that. 

So, in a nutshell...

Prayer I'll get over myself and just deal with going bald.
Prayer that my moods will stay normal, I don't want my family to have to deal with unexplained grumpiness.
Prayer that if it is lupus, they'll find out soon enough in spite of the fact that I'm trying not to go to the doctor till I've been on the medication at this does for 6 months...another 5 months or so (we are seriously struggling to pay medical bills...my 3.5 year old had 2 hospital visits in about 3 months). 
Prayer that the last seizure I had will be the last one and this dose will do it for me. 

Sara

Oh Sara. I am definitely praying for a healing for you forom all of this. You are a young mother with two babies to raise, you surely don't need something like this hanging over your head.

Oh, Sara. What a big load you're carrying right now.

Thank you for being so honest and thank you for your love for God. And for your attitude. I've endured periods where my hair would get thin - it's no fun. Maybe a nice looking wig now would be desirable.

Mystep mother wore wigs all the time, and it was several years before I even knew it. She kept her own very thin hair cut very short so it was easy to wear the wig without worrying about the natural hair being hard to deal with.

Marilyn, your message is so right. Sara doesn't need this to deal with.

Father, in Your Son's Precious Name, I pray that you'll strengthen this young mother. You can guide her doctors in the treatment with the least side effects. You can encourage and protect this mother and her family. You can send your Holy Spirit to be with her and to comfort her and to guide her through these troubled times.

Please help her husband and children during this period. They, too, need encouragement, and strength, and health, and peace, among other things.

Only You know, Father, how to heal and help and be with this family.

We pray your blessings be with them each day, and that Sara and her caregivers can rely on Your guidance and strength as they meet these challenges.

In Jesus' Name, I pray, Amen.

Sara, thanks for posting this here.  I know that the folks here will be praying for you.



(Sara has gone to the coast until next weekend)

Pat, thanks for posting the link.  I usually check in the prayer and praise section, but somehow just missed doing that.

Oh, dear Sara, of course I will pray for you.  You are facing a lot.  God is faithful.  You just wait and see.  It may take time and time, but keep your heart hidden in His and He will be your protector, your hiding place, your strength and your healer; the One who is crazy over you.

Bless you, Sara.

I heartily echo the prayers already here.  Sara, you will henceforth be able to comfort many others who have vanity problems - they are very, very common and easy to fall into.  So be sure and thank our Father for this problem, as it will make you a better minister of His love.

Sara ~ You have my prayers!  My, what a load to bear!

Sara, I am also praying.  Thank you for sharing your concerns here and I echo the prayers already posted and add my hearty AMEN to each of them.  God is an AWESOME God and He will be your strength, comfort, guide, and your absolute ALL as you continue to hide yourself in Him.   

Oh, dear Sara,

I am here --words are hard to convey at a time like this; so I am asking Our Heavenly Father to look into my aching heart for you to hear the words that I can not convey.

At the same time I am giving HIM the praise and glory that HE deserves when HE answers our prayers that are being sent up in your name.

Bless you,

Take care, have courage and the faith will be there,

Love in Christ,

Joyce

Sara:   I am praying for you as well.  seizures are very stressful for you but they are also difficult for your husband and small children to watch as you have one and then struggle to recover. 

Ruth

I am praying. 

Remember God cares about every detail of our lives. 

Nothing is too small for Him.

Sara has posted the following today in the Moderator's area of Photography Cafe and she's given me permission to post it here.

Please join me in prayer for our Sara...


Pat, I don't have long distance on my phone or I'd have called you yesterday.


I've always said that I have only 2 brain cells and they are anti-social.  Well, apparently one of them is now confined to a wheelchair also.  Sorry, I'm having a bit of a pity party right now.  I heard from my Neuro that the MRI I had around Christmas shows change.  That means (the nurse didn't say and I didn't think to ask till after the call...I was a bit shocked) that either the atrophy of the temporal lobe has gotten worse, the calcification of the hippocampus (sp?) has gotten worse, or both.  She said that it means either I have ongoing little seizures that are damaging my brain more and more, or a non-malignant brain tumor.  I have an EEG tomorrow and then another contrast MRI (where they inject you with dye) in 2 months to compare with the one I just had and to see how much more my brain has deteriorated.

So, I'm afraid that my worst nightmare is coming true...I am losing my mind.     I don't know what is going to happen next.  The EEG may or may not show anything.  I've had 4 or 5 already, and only one showed anything resembling seizures.  I'm not holding my breath that this one tomorrow will show anything.  It is a sleep deprived one, so who knows...I may have to force myself to be social and hang out on here just to keep myself awake...supposed to only get about 2 hours of sleep, if that..and NO CAFFEINE...bummer.

I don't tend to like to be social if I'm feeling grumpy because then I might not come across the way I intend to and I might offend someone.  So, I'll be staying away till I come more to grips with the fact that my brain is going away.

Praying!

Kevin

Thank you Pat and Kevin...I truly appreciate it.  I'm trying to keep it together.  I'm not generally a person that cries, but I've done a bit of it today.  Pete was sweet and after I called him at work to tell him, he brought me home some flowers, some Ben & Jerry's Brownie Dough ice cream, and made guacamole (he makes really good guacamole), he knows my comfort foods.   

Anyhoo...I need to start singing the song "Blessed Be Your Name" and will probably see if I can get my best friend (music director at our church) to add it to the song list if not for this Sunday, at least next Sunday.  It is always a good reminder to me.  That, and looking at pictures from when I went to the Albanian orphanage to help out...whatever happens, it isn't as tough as what those kids deal with on a regular basis.  Still, it is easy enough to tell yourself not to let things bother you, it is a bit harder to put it into practice. 

I don't know what happens next after the EEG and next MRI.  I know that if it is the little seizures she'll up my dose of meds and maybe add in another into the mix which will increase my side effects by quite a lot.  I don't know what they'd do if it is a tumor (even though it would be non-malignant, it can still grow).  I had a tumor in my toe because of doing 10.5 years of ballet when I was younger, and that was easy enough to remove.  Ok, so they had to take some bone and tendon too...but I got to watch the surgery which was cool.  I'm not quite as fine with the thought of brain surgery. 

So...

I would love prayer for my husband Pete...this can't be easy on him but he's not one you can generally tell what he's feeling.  He isn't the sort to tell you either.  He pretty much has never shown much emotion...he stays on an even level all the time, not bouncing around like I am right now.

I'd love prayer for my boys Liam (6) and Tiernan (4).  Tiernan is getting tested tomorrow actually for Asperger's syndrome and he is completely oblivious to anything, but Liam knows that I take meds 2X's a day and is such a sensitive guy that he worries about me even though we've just told him it keeps me from getting dizzy.

Prayer that I'll be able to get my emotions under control and remember that there is nothing I can do about it other than pray and leave it up to God.  I have to stay positive and cheerful because of the boys.

Sara

Sara this is so heartbreaking, I am praying for you sister.

Glad you checked in Sara.  Please know that I'm praying for you and Pete. 

Let me know too when you want me to phone you again. 

Thinking of you especially today. 

I'm praying too, Sarah!

I just have had God do a miracle in my Aunt's life over the New Year and I know He can do it for you, too.  If it's His will, I will pray for complete healing.  If it's not His will to completely heal you, I will pray that He will overwhelm you and and your family with all of his strength and peace and all that you will need to deal with your health problems.  Know that others are on their knees at the feet of Jesus on your behalf.

Blessings, Kathleen

Sara, my heart is touched by your circumstances, but how I admire your courage and your determination to maintain a positive attitude!  Don't give up, and don't give in---nowhere in the Bible did anyone come to Jesus asking for healing and be refused.  He loves you, Pete and the boys with an everlasting love; He will never leave you nor forsake you.

I will continue to bring you before the throne of our compassionate Father.

I am praying.

Still praying!

Thank you everyone for the prayers.  I don't know when my EEG results will come back, but it shouldn't take them too long now that they have an in-house neurologist who will read them.  They used to send them to a different hospital because the neurologist that I'm seeing was just waaaay too busy to deal with that. 

Umm...without going into much in the way of details because otherwise this will end up a huge long post...I am feeling a bit abandoned by people IRL.  I have gotten some mixed responses that were totally unexpected.  They range from saying "great, let's hope it is the brain tumor because they'll simply go in, take it out, and your problems will be solved" to talking about how they think it is cool the idea of senility (the neurologist said I think on my second appointment with her that if my seizures aren't kept in check...it could lead to dementia) and they plan on pretending to be senile when they are older just to embarrass their kids.  I didn't, but I was very tempted to make a comment about how pretending to be senile when you are 80 and facing it at 35 (pretending to be 28) is a very very different thing.  I'm not really sure how to handle not having the people to lean on that I thought I would have.  It hurts and makes it a bit harder for me to deal with it than it was before when I was figuring I would have them there.  I am trying so hard to stay the mommy that my boys deserve and to not simply dump on my husband.  I can't  tell with him if he's upset or not, and if he's not...I don't want to know, but if he is that means he's bottling it up and I don't want to add to it and send him over the edge.

Sara

Sara ~ Remember when one is sick, the whole family is sick.  Communicate!  Keeping it within yourself is making you miserable and your family.  For instance, when my Dad was diagnosed with leukemia, he didn't know my Mom knew.  The doctor told my Mom but didn't know if Dad knew.  So for over a week, they both pretended everything was fine and dandy...afraid to let the other one know what they knew.  Finally while Mom and Dad went to the doctor together, the doctor said something about Dad's leukemia.  Mom looked at Dad...Dad looked at Mom and both at once said...Did you know this?  After that they could talk about it and not walk on egg shells. 

Some people are so shocked when they hear about a persons illnesses that they just don't know how to soothe that person.  Do forgive these people for they don't realize what they are doing.

Knowing God is with you has to be one big help.  God is good all the time.  All the time God is good. 

I am praying, Sara.  The one who made you understands all your problems and He can make them right! 

Hey, Sara ... I totally agree with Etta Sue.  DON'T try to carry this burden by yourself.  Of course, you'll want to pick your time and place for sharing, but you need someone to lean on -- someone who knows how you feel and understands the struggle.  As Etta Sue says, a lot of people don't know how to react, and end up trying to be light or joke to cover their discomfort. 

I am, most certainly, praying for you as well as your family.

Sara, I'm so sorry that people seem to make light of your situation.  Some people really don't put their brain in gear before putting their mouth in motion!  They probably didn't mean to make you feel worse or more isolated, and if you can, do forgive them (it may take some prayer!) 

I pray you will have at least one friend who will stand with you, pray with you, let you "dump" on her when needed, laugh with you as often as possible, and just BE YOUR FRIEND.

Remember, we are here for you.  Much better to have a live person to give you hugs and understanding, but hope we can help by allowing you to feel free to say whatever you want, and of course, by praying for you.  ((((hugs)))) and blessings!

Thank you for the continuing prayer.  To be honest, this kind of support is actually easier for me to handle right now.  I tend to burst into tears if someone hugs me.  One of the guys (sort of like a vice principal) at my son's elementary school had just heard about it today and started to give me a hug.  I instantly started to tear up. 

Oh, and don't anyone worry...I have never been able to hold a grudge...even if I wanted to I can't manage it.  I think I'm to lazy and it takes too much energy to hold a grudge so I don't bother with it.  I find it much easier to forgive whether the person wants you to or not.  I don't really want to get after people to let them know that it hurt since I'm sure they don't mean to.  It would only upset them if they knew they'd hurt me so I don't see the point in bringing it up. 

God Bless You, Sara!

Oh  Father, help Sara to place herself completely in Your loving hands, I pray.  Give her, I pray, a sense of Your presence and everlasting love.  Make her to truly know that senility or no senility, You still will care for her and her husband and her boys.  Oh Father, let Your love uphold her completely.  And, while I pray these lthings, I also simply pray for what we short-sighted humans want - her perfect healing.  Oh do these things, Father, through Jesus Christ our Lord.

quick update:

The EEG was clear.  That means that either it isn't caused by seizures and is probably from a tumor, or that the seizures are too deep in my brain to register which will make them even harder to figure out and treat.  I haven't heard from the big hospital here.  I called, they have my referral and it is in review.  No clue how long they stay in review.  It is a teaching hospital so it may be that I don't get in till they happen to be teaching something that goes along with what I've got going on.  I don't know. 

I truly appreciate the prayers.  I have been keeping it together pretty well, especially knowing I have people praying for me.  It makes not having support here IRL much less bothersome. 

Sara

Thanks for checking in Sara.  Not only do you have the folks on here praying, you are also on the prayer list at my church so many are praying for your situation.

God bless you my friend. Stay in touch.

You are also on the prayer lists of the prayer chain at my church.