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Ok, update on me.    I see the big wig neurologist on Thursday.  We'll be leaving for the beach tomorrow but I'm taking my sister-in-law (Pete has to stay home till Saturday).  I'll leave Thursday morning and drive the 2 hours to get to the neuro while she watches the boys, then drive right back. 

Right now Pete needs more prayer than I do I think.  We have reached the deductible on our insurance and are getting financially strapped.  I have taken to putting the test bills into terms of camera equipment.  This year I could buy a Canon 5D, the Sigma 50-500, a nifty 50, the 70-200L, and I think also the 17-40L to go with it...heck probably a macro lens too.  If the new neuro wants a lot more tests we won't be able to re-finance the house (which is why Pete is staying home...to refinish the floors for when we refinance) but will have to sell it.  He's stressed and I don't like that.  I'm not going to the cardiologist like my other neuro wanted me to do unless the one I see on Thursday tells me to.  I just don't want to pay for any more tests if I don't have to.  The thought of doing a VEEG or something like that is just horrifying to me.

I am so sorry all this is happening in your life.  Please know that I am quietly praying for you.

God Bless,

Liz

Thank you Liz, I'm sorry...I didn't notice your reply. 

I've got another update...of course. 

The neurologist was nice.  He said I'm interesting.    I think that was his kindly way of saying I'm weird.  He told me that he's used as just a consult sort of doctor, you go there once and then your own neuro takes care of you again after that.  He said though that he found me interesting and I could come back and at the very least call and let him know what is going on.  I figured that if it was a long appointment it would be about an hour (most neurology appointments I've had run about 1/2 an hour).  I spent about 20 minutes with his nurse, and then a little over TWO HOURS with the neurologist.  The office had been closed for half an hour when I left!  He was very thorough.

He said that I have what seems like a combination of seizures and migraines as well.  The headaches I get he doesn't think are the electrical depression after a seizure, but are more migraine like.  The dizziness and such that I get is more like seizures though than weird migraines.  See...I'm interesting.

He knew that my biggest problem isn't the fact that I've got these spells but with my brain's ability to function.  He said that at my age (umm...he said I look more like the 28 that I only admit to so we'll stick with it for the time being) I shouldn't have any memory or cognitive problems.  He did a couple tests.  One, he timed me for a minute to see how many words I could come up with that started with the letter C.  I was above normal on that.  Hmm...someone who is the queen of rambling coming up with a large list of words...how weird is that!?  Smiley  Then, he asked me who the last few presidents were.  I started losing it after Clinton and even had a hard time at first remembering it was Clinton.  How pathetic eh?  Then, he asked me to count backwards by 7's from 100.  I sucked!  He was going over the results with me and said that "well, maybe math just hasn't ever been your thing".  He was rather surprised when I told him that I'd taken 2nd in a 3 state math competition for pre-calc back in high school.

So...he's sending me to a neuro psychologist.  No, it isn't what you think...I'm not abnormally insane (well, I could be but that isn't why he's sending me to one Wink ), they test your memory though.  He said the testing takes about 3 hours and is very boring.  He said that we may find that even though I feel so much less smart, I'm still about normal, and then we'll just use it as a baseline.  If it shows though that my brain power has gotten worse, we'll do more testing to figure out what is wrong.

He could see what the other neuro said about the degeneration and calcification but said at the moment he's not worried about it.  He said that if things get much worse we'll do more testing like the multi-day EEG.  Thankfully, he doesn't feel the need to do it just yet.  The drug I'm on works both for migraines and seizures (though better for seizures) so he figures I've got my bases covered.  I'm on a pretty high dose (400mg/day vs the average 300) but not extremely so and I'm tolerating it well so he wants to keep on keeping on.

I feel better having talked to him and knowing I've given him something to think about.  Wink  He's the best epilepsy doctor in Oregon so I'm thankful I got to see him.

Pretty much the only major update you can expect next will be after I find out if my memory is as shot as it feels it is. 

Thank you, Sara.

I'm continuing to pray for you, Sara.

Just wondering how your health is, Sara. 

I had a time of prayer this evening for you.

Sara...just to let you know that my prayers are continuing for you and your family.  Let us know how you are? 

Sara, you are not forgotten.  'Tho we can't see one another or touch with our physical senses,  we are here for you "in the spirit"

I am praying things begin to improve for you and that you will be here soon with another update.

Jesus loves you, and so do I.      

My prayer for you, Sara, is that our Father will fill you with His comfort, give you great patience and peace, and make you very, very aware of His loving and healing hand.  I pray He'll do all this through our Lord Jesus Christ.

Sarah, I certainly am supporting you and your family with my prayers, as well.

Ruth Ann

Sarah Just rest in the Lord.  I know this is stressful for you, but you can KNOW we here at CP are praying for you and KNOW you are in our Lords Hands.  He will care for you.

God Bless Sister.

Thank you everyone for the prayers. 

So, I'm getting a steroid injection into my spine on the 5th to counteract the pain still left from the car accident.  My doctor thinks that it should give at least long term help if not just give my back a break it needs for it to completely recover.

My memory test was yesterday.  It was about 5 hours of brain numbing tests.  The personality type tests (just a couple) that I took made me laugh actually.  In order to check yes on some of the questions...I think you'd need to be the type wearing a foil hat.    I did poorly on the fine motor skills which is very unlike me.  If it is a side effect of my medication it is a rare one.  No surprise that I'd have abnormal reactions though...I am the ONLY person that now 4 neurologists have ever seen have the side effects I did with the first seizure medication I was on.  I can't seem to do anything normally.   

I didn't do well on one other test, but did fine on a couple similar ones.  The doctor said that if he hadn't talked to me and found out what my capabilities were before he would have assumed I was a normal person pretending to still be 28.    I was above normal (which technically would be abnormal) before, and now I'm down to normal.  I don't feel like I have control over my brain anymore, and noticed a marked drop during my second year taking Japanese back in the 2006/2007 school year.  He doesn't know why that happened and apologized for not being able to give me anything more helpful than "well, you are pretty much normal now".    I still don't like that my memory, concentration, and ability to speak have gotten worse, but it is nice to know that I'm not as bad as it feels.  My best friend (who has known me for longer than I admit to having been alive and knows what my norm has always been) said it is like someone going from 20/10 vision down to 20/20 and feeling like they suddenly can't see. 

Anyway, you can pray that the insurance covers the test.  We've already had about $3500 in medical bills this last year, but would have to get to $10,000 before we max out.  We can NOT afford to pay much more before we'll have to try to sell the house.  My husband is stressed.  I'm hoping to maybe be able to get a job for nights...I work at our church for $500.00 a month, but pretty much that just covers Liam's school and a bit of groceries.  With 2 boys...well, we go through 2 gallons of milk a week most weeks.  I'm sure not looking forward to when they are teens   I would not put Tiernan in day care, and he's not in school, so I would only be able to work after Pete got home...which some days is not till 7:30.  If I could work several hours a week that would probably really help.  So, maybe going from 8:30-11:30 (so I can stay home with the boys till they are asleep).  Pete doesn't really want me to because of my back, but hopefully the spine injection would stop that problem.  Anyway, you can pray about that decision too.

Sorry I tend to ramble on so much.  I truly appreciate the prayers, thank you.

Hi Sister Ellette,

I do not know you or anything about you, but I find it makes me angry when I hear of a brother or sister in Christ going through such hard things.  Our words can only offer minimum comfort, yet I am reminded of how God promises that what ever the enemy takes away from us he has to repay.
        I am joining in unity with the others in prayer for you and your family, just know that God has a plan for you, and it is never over until God decides it is.  He is the giver of life.  I pray for the peace that passes all understanding to overcome you, I pray for the Joy of the Lord which is your strength, and I pray for healing in your body for you are the Temple of the holy Spirit......when we pray in agreement and according to the will of God we can expect God to honor his word.
      You are loved by many people as I have read on this forum, and I am sure that there are others praying that we are not even aware of...
     You are special in the site of God he has numbered the very hairs of your head, and knows what you have need of even before you ask.....
      Wow I did not realize I was so intense, but like I said, I hate it when bad things happen to God's people...
    Love you in Christ, have a very blessed day...
          LarryBoy

I will definitely be praying for you -- both for you physical state and your financial state.

As far as the cognitive stuff -- I can kinda relate because my husband has been going through it as well.  He is 40 and had open heart surgery last April (2007).  Since then, he has a hard time with memory tasks and other things that used to be "easy" for him.  He was very frustrated until he found an article detailing what is called "pump head."  Apparently, when a person is put on a heart/lung machine for heart machine, there is sometimes as much as a 10 - 15% decrease in cognitive ability afterwards -- especially pronounced in men.

Don't know why I shared that with you other to say that I know it is frustrating, because I see my husband's frustration. 

You are in my prayers as well Sara.

Father you know the entire situation here and know the hearts of this family.  Father i pray that you meet their needs as you know them before we even ask.  Guid each of them in their plans to make ends meet. Father our heart aches for our sister here, touch her so she knows Your Presence in all that happens.  You are the Devine Healler, I pray that you touch her with your healling hand according to your will.  Be with each family member and comfort them in this time of uncertainty.  In the name of our Lord

saw my original neurologist today.  Love her.   

She gave me another prescription to take when I have a few episodes.  I can take them for 3 days.  I seem to have a couple days in a row with some minor spells, and she's hoping this will solve it.  If it doesn't work she might have to up my medication and I'm on the high end of normal already.  She said that she feels the reason the head honcho (I make myself laugh...head honcho...brain doctor...hehe) found me interesting and said he'd see me again even though that isn't normal for him to do is because he may want to talk to me about surgery.  She said he's the best in Oregon at doing minimally invasive surgery where they take out the smallest bit of brain they possibly can and still get the area that is missfiring.  She is the top expert in Oregon on temporal lobe epilepsy like I have...but he's the top epilepsy doctor. 

Anyhoo...I'm on the high end of normal dose levels for the medication I'm taking and she'd rather not have to up it or add another full time medication so hopefully this 3 day one will work.  She says that now isn't the time to start talking about surgery, but to start having me think of it.  They like to do it sooner rather than later.  TLE can go from what I've got with just simple partial seizures to where you have uncontrollable tonic clonic seizures (the ones that used to be called grand mal), with no warning.  The earlier you get the surgery if you need it, the more likely it is to work. 

She's a bit concerned with the lack of fine motor skills I've got, but is willing to wait and find out if it gets worse.  Also, she understands that while I tested as normal, I may not be normal for myself and we'll use it as a baseline.  She said that normally they only see people once every 6 months, but I have to start keeping a seizure diary and if we don't get them stopped, or I start worrying I have to get in sooner.  If I have another big one I have to call her right away.

Sarah, we're continuing to support you with our prayers.

And, Karma, I'll be praying about Nards' situation, too.

God's richest blessings be with each of y'all and your families.

Thanks for the update, Sara.

Please know that several of us are still praying for you.

Elette Is there an update on your condition?

Thank you for asking.  I went to the neuro yesterday in fact.  My med isn't stopping things well right now.  She is worried because she says that going to England will probably trigger seizures.  Because I'm on the maximum dose she's comfortable with for the med I'm on, she doesn't want to up it (you can, but it isn't a good idea).  So...also because being on the smallest dose possible with the secondary med she gave me a bit ago caused such severe side effects, she doesn't want me continuing on that.  She was SHOCKED with how strongly I reacted to it.  Usually at such a small dose you don't really even notice it...me sleeping 18 hours straight is hardly a barely noticeable side effect.    What she's done now is prescribe another prescription (Dilantin) that I'm supposed to take daily along with the Lamictal.  Then, she wants me to have Ativan on hand at all times in case I start having seizures.  She said that we have to be careful because it can go from the type of seizures I have to the serious tonic clonic ones in an instant and then we'd need to quickly raise funds for brain surgery. 

*warning TMI for most boys *  We are actually hoping that being on birth control will help because with this type of epilepsy it can be VERY tied in with your cycles.  Seizure meds seem to effect mine anyway...without having gone on the nasty seizure med I was on back in '00 I wouldn't have been able to get pregnant.  So for me it is kind of a nasty cycle...the seizure meds alter my cycle so I don't know when the seizures might happen...and birth control can lessen the effectiveness of the meds, but my cycles cause the seizures to happen more which means I need the seizure meds which makes it so I don't know when...you get the idea.    Hopefully what I'm on now will regulate things.  I can't go on the pill because of how strongly I react to medication in odd ways...it made things MISERABLE instead of 1 week on 3 weeks off, it was 3.5 weeks on 1 week off.  See, told you it might be TMI.    

I'm still praying for you. But I have one question; are you still going to England?

Yep...though I'll have to warn my hosts that I may have my seizures or even worse ones than I've had.  I've got my medic alert bracelet.  If I suddenly have to lie down to keep from falling down, I'll just hope that it is dry.

OK Praying

Me, too.