Tuesday, July 28, 2009

He Is Still God in the Fire

Ok, I know I just posted, and its rare to get a double post, but I just keep thinking about this, I am still in prayer mode, its been a really hard few months, and I am playing my favorite tunes....

Even when things seem out of control to us, they are never out of control to him.

God....is ALWAYS in control of whatever comes my way, I feel taken back to camp meeting days, Winterfest, youth camp and prayer meetings in college, where the Holy Spirit fell and the anointing of Gods presence was too much to contain.

I am overwhelmed to see whats coming next, God is in total control, and I look into the scriptures to see that if WE, his people, Pray, HE will do great things...


A few thoughts, but I know the Master of the Wind

Today has been emotionally draining, so, when I am having a rough day, I spend alot of time in Prayer...

I have a few verses that really come to heart when I am struggling 1 Peter 5:7 and James 1:3, and Romans 8:28....God really is in this even when it doesn't look like it.

Sunday, July 26, 2009

I am so tired of being sick

Today I went to church, lunch, then slept ALL afternoon, grabbed some light dinner, feel incredibly nauseas, and feel like death warmed over.

I am trying to watch some tv and going to down about a quart of Crystal Light, but my goodness it seems to be killing me slowly...

I don't want to give up, but I am really feeling worn down.

PTC and Chiari really kill the head. I want insurance so I can get the endocrinologist app scheduled.

Saturday, July 25, 2009

still struggling

Well, I am worn down. My head is not cooperating, I am exhausted. My brain is killing me slowly.

Its been a rough week, and I don't know how much more I can take...

Saturday, July 18, 2009

Just OFF

Ok, I am tired of whining, but since its my personal journal, if you don't like it tough.

I am freaking out, my balance has been off on and off for a few months now, but this week its been so bad that Chris has mentioned it. I wobbled with my cane a few times today and that always poses concern..

I have had at least one near fall every week for the last 5-6 weeks. I don't want to go back to the doc til I have insurance (or my next appointment if that comes first) Its just scary to think of what might be happening. My nerve damage seems to be stablizing itself, I am not getting as many shooting pains, but my balance is shot and even sitting up is often a challenge. I am also struggling while driving, I am noticing even my vision seems to go one sided. I will call if it continues, or head to the ER, but I don't really want to do either since there isn't much anyone can do without the insurance.

My new social worker is very nice, she is going back over what the old worker didn't take care of and getting my medical bills taken care of...better late than never. She is also very respectful so that gives me extra confidence in her (and they paid my back gas bill, which wasn't much, but it helped ALOT)

Anyway TRYING to get to sleep not having much luck.
Good Night

Tuesday, July 14, 2009

Still in extreme pain

Its gotten so bad I don't remember the last good day I had, I used to get a few here and there, but not lately.

Every muscle and joint and nerve hurts so badly its rediculous.

I want to get something for the pain, but it makes no sense with no insurance....it costs too much.

I am having trouble focussing and thinking straight, my head hurts so bad all day and I am constantly nauseas. I am just scared this is never going to get better.

I think I am going to try drinking more this weekend to see if that helps...starting tomorrow I think I am going to eat less and drink more...lets see if I am dehydrated and thats my issue.

Friday, July 10, 2009

cant catch a break

Ok this is getting rediculous, I have been drinking, trying to stay hydrated in hopes to kill this darn headache, NOT WORKING....Its starting in my neck and going around BOTH eyes, I get so nauseas and sick I just want to puke.

My balance has been off more than on and yesterday I got lost drivin roads I drive routinely, Frankly I am getting scared. I can't concentrate and am struggling to do ANYTHING at all. I do not like feelin this way, I do not nor will I ever be able to accept this new way of life, this is no life, and no I do not plan on ending it....I get so sick of people asking if I am depressed...NO, I am in pain, and while the two can go hand in hand, I do not feel depressed, I feel frustrated that I can Not do ANYTHING without causing my brain to rebel.

I am tired and going to bed early tonight, I can barely see, actually as I type this I can't make out the letters on my screen, I just know where they are and can feel that I hit too many keys, trying to focus it in is killing me Good Night, praying for some relief tomorrow

Wednesday, July 8, 2009

Pain Out of my Mind

Ok, I am tired of this, all afternoon I have been battling a HORRID headache that started at the base of my neck and creeped its way across my face, down my shoulder and its just getting worse, I just took a couple of flexeril in hopes of relaxing the muscles so that it will ease a bit.

I am totally nausesas and really just feel sick. I haven't been like this hardly at all since my tap in April, May and June I had one REALLY bad day each month, so far this is the 2nd one in July, and its only the 8th.

Monday, July 6, 2009

Family is Better, and Much needed Relief

Yes, Yes, we worked everythin out, I knew we would but I really REALLY needed to vent the other day.

I have been a part of a PTC support group since my last MAJOR flare (after my post-op complications I felt very alone in the journey) Anyhow...
I know my problems are not mostly PTC related, I have done quite a bit of research on lots of it and with the diagnosis of the Chiari last year I started doing even more research....well I am seeing that its more the Chiari issues that I am dealing with, not a huge deal, its life....but my docs all wanted me to get a VP shunt placed last year and needless to say I was not looking very highly into it since its major brain surgery....don't ask why the potential of decompression scares me less, it doesn't make sense to me either.

Anyhoo...On our PTC support group recently we have had Several people get VP shunts, NONE have had truly positive results. One has been hospitalized for a small bowel obstruction (a mere 3 weeks post-op, they claim is unrelated) a second one wound up with a major infection and was basically told to stay away from everything for another month, and a 3rd wound up in more pain from the shunt, headaches worse than before and basically just majorly regretted these decisions.

My docs said unless it started affecting my eyesight they would not consider a VP at this time, the risk outweighed the potential benefits....I was questioning that since I have had very little quality of life ever since the flare in 2007 and before....now, Since none of these people had major vision problems and all had the VP shunt put in with all of its complications, I am seriously grateful for MY doctors who said NO, its not worth the risk at this time.

Ya, I will get sick over and over again and it will cycle, I get about 2 good days a week or so and try to do SOMETHING every day, even if its just to go out, and when my body says enough, I rest and recover....its a cycle I have been living with for many years. I would rather get sick over and over again and have a few good days here and there then suffer not knowing when or where I was going to get sick because of the shunt. I know their failure rates and they are HIGH. If it starts to REALLY affect my vision again, I may consider a shunt, but I will literally have to be going blind as fast as I was when I had my Optic Nerve Sheath Fenestration done in 1998 to consider the VP shunt.

Ok, so now you ask why do I not feel at all stressed about a possible decompression surgery, much much riskier than a shunt, much much more painful, and overall just a harder surgery? Well for some reason, I know its not the time for it right now, and I know the time is coming, I am having drop attacks at least once or twice a week, I still can't navigate the stairs, my balance is still way off, and I am having problems swallowing my meds including the CHEWABLES. I know when the time is right, I will have complete peace over it, like I did when I had my ONSF and shunt put IN, I had a weird sense about the revision, something just seemed very uhm....lets just say I knew in December that something more was goin to happen and the surgery wasn't even scheduled til January 2nd for February 1st.
I am glad God did not tell me what was going to happen, I wouldn't have gone through with it and I would have never found out about the Chiari, probably making it much worse in the process since the shunt would have continued draining even at its slow pace.
I know God protected me then and he holds me now through this and will protect me in the future as we go through this battle....it WILL be ok, GOd is in control.

Saturday, July 4, 2009


Chris and I are fighting AGAIN, he is getting on my last nerve, ok, he got on that a long time ago, but its just getting worse and worse.

My headaches are through the roof today because of the stress of dealing with him. All he does is play games and eat. Oh ya, and complain about Lauren or I doing this or that.

Well today he got mad because I said something the first time Lauren kicked her feet, all he does is yell at her, no other discipline at all, and he expects me to "fix" the issues....I can't fix her, half of this is just him being around her so much.

Then while she was being read to tonight she contorted herself to kick me in the face...while that upset him, it made him madder that I yelled at her after the 7th time of her kickin me (I never yell at the first or second incident)
He tells me I am over reacting, the only time he spends with her is when I am asleep or at a doctors appointment and I am over reacting? She may kick him under the table, but I am tired of it all. He is ignoring her whining over not getting to see fireworks, it was her choice, since she got sent to bed for misbehaving, but is he making an effort to support in discipline, NOT ONE.

I am so annoyed right now, ya, its his birthday, but he and her faught on mine too, all day they bickered and over half of our plans blew up in my face. I am just tired of dealing with his crap....HE NEEDS to get a job and get out of the house some. Sitting in front of that game all day is just too much for me.

Thursday, July 2, 2009

Busy very busy

What a week it has been.

On top of being very sick many of the last 10 days we have had a gazillion things going on.

I had a birthday, not a good day. Lauren had a birthday, a bit better day, We rearranged two rooms (flip flopped them)Lauren got a new bedroom, when it is Finished being put together, I will post pictures.

Chris has a birthday Saturday.

I had a doctors appointment, she is sending me to an endocrinologist and gave me a new inhaler.

I had a DHS Appointment, that went well considering their roof caved in this past Thursday.

We will do a phone interview instead, but I think I am gonna like this worker.

A good friends mother in law needs prayer, she had a stroke.

My health has been declining, but I keep trudging along.