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I just finished praying for you, Sara.  Have a blessed day.

I just finished praying for you, too.  I prayed you will have the support you need when you really need it.  That when you don't feel it from people that you will feel God's loving arms around you. 

I know it's hard when people make light of things like this.  I had people do that when close family members of mine have died.  Sometimes, if they haven't been through it, they just don't know what to say or do and so right there on the spot...they say something stupid.  It's just human nature, I guess.  It's not that they don't care or feel for you...they just don't know what to say or do.

Men do tend to keep their feelings in much more than women and they deal with things in totally different ways.  Try not to consider it dumping on your husband, when you share how you feel and what you are going through.  He's your life mate, in sickness and in health.  You're in this together, remember?  Try to think of ways he CAN help and things he CAN do to help you.  That's what they DO.  If they don't know what to do, and they can't fix the situation, they feel helpless and often remain quiet or get angry.  If you give him something to DO, (even just picking up a few groceries or watching the kids for an hour while you relax in the tub or with a good book, or ask him to give you a backrub) he may feel better too and be able to share more with you.  That's what I do with my husband during our times of hardship or grief.  Guys are just wired differently and just because they don't share, doesn't mean they aren't feeling. 

I prayed for your kids also.  Sometimes, it's okay to break down in front of the kids.  You can't stay "up" all the time when you're going through something like this.  It will only add to your stress and may make the illness worse.  My kids are some of the biggest encouragers and hug givers I have!  But, if they think you're always fine and happy, they don't know you need the hugs, either.  If you see they are upset by your tears, after you hug them...maybe tell them of something they can do to help.  (even a small chore) It makes them feel better, too.

You may know all of this...I'm just trying to help and encourage with what is coming to my mind to say after praying for you.  I hope some of what I've said will help.

I pray God's miraculous healing on you if it be His will.

Blessings, Your sister in Christ, Kathleen

Just a quick response...I'll thank you all more later. 

I finally got to schedule to see the doctor at OHSU (the only level 4 epilepsy department in all of Oregon...level 4 is as good as they get).  He only sees patients on Thursdays so the first appointment he had available is March 27th.  Of course I took that one.    I'm a bit anxious but also excited to see him.  We'll see how it goes. 

Sara

Well, I had to update because it is praise.  I still haven't had my mom, dad, or sister ask me even once how I'm doing, and none of my three good friends have asked me anything either.  Still...I'm feeling SOOOO much less abandoned by people IRL.  Thank you for the prayers, I am sure they are working.

My neurologist called even though I've been transferred to a different neurologist and she didn't need to call me.  She said that she had heard about my big seizure I had on the 19th and the little ones that came for a few days after that.  She wanted to make sure I was ok, upped my medication a bit, and told me that she had written very detailed notes for the new neurologist.  She was very obviously not excited that my OHSU appointment isn't till the end of March, but she said that between the two doctors she was sure I'd be in good hands. 

The other day I was at church (I'm the treasurer for the school and the church and teach VERY basic Japanese to the kids...they are pre-K and K kids.  Not much can you teach them in just 15 minutes twice a week especially when some of the kids are only there one of the days) and the head teacher came up to me and asked how I was doing.  I've decided to say "oh, you know" in a sort of non-committal way but not trying to sound like I am having a bad day.  That way, if they really want to know they can ask me and if they don't really care they can just assume it means I'm what they assume to be my normal cheerful.  So, after I said that she came up to me and said that she thought I needed a hug. 

Then, today I was doing payroll and a mom came in to see me.  She and I talked last year because Liam was still in the school, but I hadn't seen her at all this year.  My dad had told me I should call her but since I hadn't seen her I didn't want to simply call her out of the blue to complain.  She asked how I was doing with my seizures.  So, I told her what is going on.  She asked if I was scared which instantly made me lose it.  Then, she started to cry too which made it even harder for me.  She didn't know but it was exactly what I had been needing from ANYONE here IRL.  We talked about how it is harder to completely give it over to God when you don't know what it is you are giving over.  If you know what it is you are fighting it can be easier to feel His hand helping you.

So, I'm feeling much more able to handle this.  It is hard to know that you can't seem to completely rely on God no matter how hard you try to let go, I wish my faith was stronger than it is.  I am relieved though to have some human support to help.

Sara

Bless you, Sara.  Yes, I agree that a "real, ,live, right there in front of you, flesh and blood person is needed at times.  We are human, and long for an understanding human touch at times.  So I am very happy to read that you are receiving this in some small measure.  We will keep praying for you that it continues and grows.  Here are some cyber hugs for you---not the same, but the best I can do from here.  {{{{{{{{{hugs}}}}}}}}}

Love, Janet

Sara I am sending you cyber hugs as well. We all need someone who "really" wants to know how we feel and someone to cry with us  when we hurt inside.Since I live alone I can really identify with you about needing a real peson arouns to care.

Thank you for yoru continued prayers everyone.

I just "talked" to Pat and told her about what is going on right now but thought I'd update you too. 

My dad has now realized that he'd just been assuming I was fine and my normal cheerful steady self.  My sister still hasn't bothered to ask how I'm doing, but it isn't a surprise to me, I probably won't hear from her unless my dad talks to her and tells her she has to, or if I end up going in to the hospital for a VEEG (24 hour EEGs...seems to run 3-10 days long) or a Craniotomy if I have a brain tumor and it is operable.  My mom still hasn't asked me how I"m doing but she just lost her dog so I don't figure she's got any spare emotional space to deal with me right now.  She is still worried about my sister too...so one of these days she'll  come around, though probably not till she's done with her MFA program, that is about as much stress as she can handle.  Anyway, I emailed my dad some of the statistics about epilepsy and brain tumors (things like the fact that more people die each year from epilepsy than from breast cancer) and he can now understand why I'm a bit freaked out.

The one fact about epilepsy that bothers me is the one that 1 in 5 people have learning or intellectual disabilities.  I don't have the brain power I used to have just a few years ago.  I could almost feel my brains begin leaking out my ears while headaches and dizziness started growing.  It was during my second year taking Japanese.  I had been doing very well.  I was getting as good or better grades than some of the students who had taken 4 years of Japanese before, and even some who had lived in Japan before.  Then, part way through my second year of Japanese I lost it.  It wasn't that Japanese got that much harder.  It had been coming naturally to me.  I was trying to hide from the other students that I was having headaches, and what I later found out was seizures (I just get dizziness and sometimes hearing and vision changes...they are called simple partial seizures).  It got though to the point where one day a couple of the students were freaked out and made me go home at the break instead of staying for the rest of the class.  Since then, my brain has no longer been my own.  I'm 35 (don't tell) and I'm not supposed to have lost my ability to trust my brain yet.

So, my dad now understands that him not checking on me was hurtful and he will be more aware.  He's just not used to me not being ok I think.  He's great at checking up on people in our church and my sister and my mom...I've just always been the stable one he doesn't have to worry about. 

Sara

Sara, I'm praying for you so often during the day as I go about my daily chores.  Tonight, as Paul and I had our devotionals together, you were remembered by us both across the telephone wires.

Thank you for remembering to keep us updated on here.  Many pray and read and don't post so your updates are wonderful to have.

Thanks once again too, my dear Sara, for the help you were tonight on PHotography Cafe with that little emergency job we had to do.

MRI is on Monday the 18th.  Don't know what I"m hoping to have the results be.  If it is a brain tumor then I'll know what I'm facing.  If it isn't a tumor I have lots more tests and nasty drugs to look forward to. 

Sara

Sara, just prayed for you.

Will be thinking of you tomorrow.

Love

Pat

Thought I'd update you.  The neurologist still hasn't seen the MRI but the radiologist gave his report to my PC doc and they said there is no change.  I don't know what to think because with the MRI in June/July the radiologist had said it was fine and then my neurologist said it wasn't.  I really don't now whether to relax, be more upset, or what.  Relaxing isn't something I seem to be able to manage at the moment, so I'm opting for the "or what".  Seeing something on the MRI would have been straight forward and something that would have a definite solution most likely, this leaves things up in the air for lots more testing and drug experimentation.  I didn't even try smoking when I was younger...I don't relish the idea of starting to experiment with drugs now!  =)  I see the neurologist that has taken over for mine that left on the 27th of this month.  Then, I see the director of epilepsy at the science hospital the 27th of next month.

Being brutally honest, along with the fact that my brain has deteriorated the thing that scares me most is the thought that I'll go back to just having to deal with this and having no diagnosis.  I was so happy to finally have an explanation for things when I got told I have epilepsy, but I'd have been happy with ANYTHING.  The last neurologist I'd had told me I had abnormal brain waves (ok guys...keep your jokes to a minimum!  2funny) but he didn't know what they were, and gave me the diagnosis of weird...which I could have told him already.  Smiley  Seriously though, he actually just told me that my brain was weird and left it at that.  Thank you.  That didn't help me and I went for 7 years before I got a real diagnosis.  I am more scared of being told I have to get used to it again and simply deal with it than I am of anything other than the idea that my brain is deteriorating with no way of stopping it.

So there you have it.  I'm not sleeping very well...ask Kev.  Smiley  I think after I find out if both the new neurologists won't abandon me to my brain (which I've decided is out to get me Smiley ) and if there is anything we can do, I'll get back to normal/cheerful.

Sara, when you say, "Being brutally honest, along with the fact that my brain has deteriorated", what do you mean?  Is it shrinking?  How has it deteriorated?  Sorry for the questions...   

Still praying...

Feel free to ask all the questions you want. 

Areas of my brain have actually shrunk (the new neurologist said "deflated"), and there is a bit of calcification that shouldn't be there at my age.

So, I went to the new neurologist...I'm not sure I like him...wish my old one hadn't left.  He kept latching on to little things I'd say in response to a question, and wouldn't listen to the rest of it.  For instance, I told him that I'm prone to bronchitis...had it 6 out of the 9 months I was pregnant with Liam, and I've been coughing 4 months now.  He instantly got almost excited and checked to see if cough was a side effect of this seizure medication.  Umm...I've only been on the meds for less than 9 months...did you not hear me!?  He'd never ever heard of anyone having the reaction to the med I was on back in '99-01 (I lost my appetite completely, had to force myself to eat, and yet gained 40 pounds in one month). 

Oh, another thing he latched on to is the fact that I've always always had a very fast pulse.  Back in college I almost wasn't allowed to play sports because my BP was 70/50 (60/40 and they start thinking you are going to die in the hospital) and my pulse was almost 100.  My resting pulse is 98.  I have PVC's (premature ventricular contractions) which I've had since college.  He again got all excited and now wants me to see a cardiologist.  I told him that I had an echo and some other things done when this all first started because they thought I might not be getting enough oxygen to my brain.  He doesn't seem to care that all the symptoms he was interested in have been happening for years and years, he wants me going to a cardiologist now to see if maybe that is making things worse. 

Oh, and he asked me if I'd ever had a head injury.  I said yeah, but it was back in '93/94, I got a concussion.  He said "THIS is what I need to know" and started scribbling like crazy and said it can cause stuff like this.  I had to remind him that it was almost 6 years before symptoms started, and he just drooped. 

The biggest thing he did that annoyed me was when he felt my neck, shortly after I told him I'd been in a car accident and was still having a bit of trouble.  He felt it, then said "WOW, you are tight, really tight...you must be carrying a lot of stress there!".  He offered to put me on a mild anti-anxiety drug.  I reminded him again that I'd been in a car accident.  I also told him that the only thing I've been anxious about is the fact that all I knew was that my brain was deteriorating and I didn't know how much or how fast or where or what was causing it. 

So, now I am starting to feel like he's hoping to just ditch my diagnosis of epilepsy, and seems to find me to be a fun puzzle to solve.  I don't want to just be something to keep a doctor from getting bored.  The only only only thing that I was happy about was that he helped with letting me know more about the deterioration.  It isn't as bad as I was beginning to think...my old neuro's nurse had just said that there was noticeable change.  She didn't tell me anything else about it, and because that was right when my neuro was leaving I couldn't talk to her.  For all I knew my brain was melting and leaking out my ears.  I was able to look at the MRI with the new neuro and while he could see the changes he said they weren't horrible and he wasn't worried.  So, now I'm feeling more relaxed and I don't feel as if I'm one step away from senility.