Wednesday, March 24, 2010

Trusting In God when Things don’t go our way

I am of No political affiliation, when I vote, I vote for the candidate that best fits my belief patterns, be it democrat, republican, or any other party unless it is a presidential election then I vote for who is the best choice to not get the one I don't want in as well.

That being said I have heard a lot of panic go about from the media especially Christians. I have but one question.

When did we stop trusting that GOD is in control? 2 Chronicles 7:14 is not referring to NON Christian when it calls for MY PEOPLE to pray. So many people are spewing out hate towards Obama and other Democrats for what just happened instead of falling to their knees and praying for our country. That hate is what caused God to remove his hand of protection from Israel, many times, wouldn't we rather be obedient and pray for our leaders, God blessed leaders and countries living in Sin because of a few who prayed, but right now we have a nation full of Christians who are turning and complaining and crying out against our leaders and bashing him and even spewing scriptures that if you read into more details could really bring quite a bit of harm to him and his family.

Do we as Christians want to be known as the nation who when praying actually prayed curses on our leaders because we were so disgusted?

I don't think so, we want God to bless him and if this is truly NOT right, which many who read this may feel, Personally, I know a few of you are ON government health care already, Does your child get MI child? That's government healthcare, Medicaid, That too is government health care, do you or a loved one get Disability and Medicare, I DO, and That too, is sponsored BY our Government, and I got my bill for my MRI from last month, an $1800 cost less than $130, Everyone cannot be pleased.

As for the abortion issue, the plan is 4 years from being put into action do you know how much can happen in 4 years? Are you really that afraid to let God be God? Remember He hasn't fallen off his Throne in the last two thousand plus years and a lot has happened in that time, I highly doubt this little shake up has him very shook. If he knows the number of hairs on our head, the number of stars in the sky Sextillions, How much more is he prepared to take care of his children in this very small crisis we think we are in right now?

This is going to be a Double Post Day

First post is short and not so sweet, my head is not being very good lately, and I have been battling with it for a few weeks and not winning. I am not sure how I am going to do this semester in school since I am already having a very hard time focusing When I say hard time I mean when I tried reading the stuff to do school it took me a few hours to answer three questions and I had to take a nap when I was done, I didn't even get past opening the other book. I couldn't read the work, if I pass the class with higher than a C it will be a miracle, but I said that with a few other classes and did really well, so hopefully we can get some better meds in my system ASAP.

I see my neurologist on April 1st so hopefully he will be able to do something or recommend a different surgeon, I have one in mind, and I will ask him about a different kind of shunt as well, I am just so tired of constant pain ALL the time.

Anyhow, that's it for this post.

Thursday, March 18, 2010

An interesting Turn of Events

This past Monday I went to a Bariatric Surgery seminar on the advice of my endocrinologist, Tuesday I went to the Medical Weight Loss Seminar. I had them All mixed up as for time and even had the day's mixed up I thought my Monday seminar was Tuesday and Vice Versa but that was no big deal, I got to both of them early and sat through them with no MAJOR ordeal (my back always hurts so it's not like it was something out of the ordinary to feel rotten when I left)

Well, the past few weeks my PTC has been flaring like something I would not want anyone else to go through, it has been REALLY bad, I finished the first half of my semester on my back and I honestly have no idea how I pulled off the grades I did or stayed out of the Emergency Room other than the Grace of God, and memory of last year's trip. It was April 2nd last year I went, and I was in bed for 3 weeks but I really had too much to get done this week to be in the hospital 3 times on TOP of the mass pain…so I prayed through it, I did miss church on Sunday and literally slept through Sunday but I survived and I am so glad I didn't go because while I don't feel 100% better, I do feel I feel better than I would have if I had gone to the ER.

At Mondays seminar, the bariatric surgeon presented his case talked and answered lots of questions and my endocrinologist felt it would be in my best interest to do the surgery first then the medical after, since she will continue to monitor over a period of time, and since no matter how little calories I do I don't seem to lose.

I see the Primary doc on the 25th for clearance then I see the surgeon for a 3 hour consult on the 30th it's moving so fast. It will probably be June or later though before I schedule surgery though. The hope is to lose about half of my weight total within the first year. Unfortunately it probably will not get rid of all my health issues, but it should take care of everything except the neurological stuff.

Sunday, March 7, 2010

Borrowed with Permission from a fellow Sufferer

I have been struggling to find words tonight to express how I felt, This Post right here pretty much sums it up…right now I am tired of putting on a happy face and pretending that everything is OK, call it what you will, Idiopathic Intracranial Hypertension, Intracranial Hypertension, Pseudo-tumor Cerebri, PTC, IH, IIH? It's all the same, It's a PAIN…and I am tired of suffering, I feel incredibly whiney right now, maybe its cause my meds are not working and its 2:41am and I am still AWAKE, maybe its cause I am in extreme pain, Maybe its cause I know I need a life back to be able to enjoy Lauren growing up…She is almost 8 and is missing her Mommy because I can't even walk in the grass with her anymore. At one point, this just affected me, NOW it affects, 2 people and two kitties as well…I am very loved, but seeing how it affects them is making this that much harder.


My name is IIH and I am an invisible chronic illness. I am now attatched to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause your head to explode and your vision to dim.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Try to have fun now! I also took Sleep from you and in its place gave you Brain Fog - Confusion and Disorientation. I can make you dizzy and sick; fill your ears with constant noise and a whole host of other things that no one else believes. Oh yeah, I can make you feel anxious or depressed too.

If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons. Maybe I chose you for your genes; maybe it was those pills you took, or the virus you never recovered from. Anyway, I'm here to stay! I hear you're going to see a doctor who can't get rid of me; I'm rolling on the floor laughing - tell him to keep trying!

You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, water pills, and sleeping pills, told you are suffering from anxiety or depression, given pills that make you tingle, stuck with needles, scanned, and when they get really desperate they'll drill holes in your head. You'll be told if you just lose weight and eat properly I will go away, told to think positive, poked, prodded, investigated by medical students, and MOST OF ALL not taken as seriously as you feel when you cry to the doctor how depressing life is every day.

Your family, friends and co-workers will listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you are just having a bad day" or "Well, remember you can't do the things you used to 20 years ago". Some will talk behind your back while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a person, and can't remember what you were going to say next!

In closing (I hope to keep this part secret) I guess you already found out…the only place you can get any support and understanding in dealing with me is with other people with IIH.

(As taken from Jonathan O'Donnell)

I cried when I read this, I have such a hard time expressing myself, about IIH in particular, and this says it all. To my IH Family: we are in this together!! Love you guys! <3

Can we say Emotional Train Wreck?

My Brain Hurts like nothing a NORMAL human being has ever experienced. I feel like I have been run over by a freight train, backed over by a Mack Truck, then dropped from the top of the Empire State Building… to say I feel aweful is one of the biggest understatements in history.

Yesterday I felt relief that Dr. Morreale was not willing to put a shunt in, ironically enough, after I wrote that post I prayed some more and realized why I felt relief, it wasn't because I don't want the shunt, it wasn't cause I am afraid of one or more surgeries that may or may not happen as a result. It wasn't because I was because I felt Dr. Morreale was a bad doctor, in fact it was just the opposite, it was something a good friend shared with me. She said a Good Doctor knows when to do surgery, a Great doctor knows when not to.

In other words they know when their skills do not meet the needs. He said flat out he didn't feel he could do it. I knew it before I walked in, I felt it the moment I saw him, he didn't test thoroughly the residents in the ER were more thorough and they were just residents. Anyhow, I think the reality is, HE was not the right doctor, not I am not ready for the surgery. A friend I met off one of my support boards is having a surgery at the Henry Ford down town, I think I may see about seeing her doctor. He knows about a different kind of a shunt for when the ventricles are too small, I may take in some of the literature on the Chiari 0 as well since everyone seems so hesitant to believe my Chiari is actually causing damage, if Dr. Heffez and Dr. Oro have seen it, perhaps they can look at it deeper here without sending me to Milwaukee.

Prayers have been a blessing, Please remember the others who struggle with this disease as well, while it may be invisible to you, the pain we live with on a daily basis is far from easy, the current estimate according to the Intracranial Hypertension Research Foundation is that there are only about 12,000 people in the US with this, now figure, the population of the city I live in RIGHT NOW is about 5,500 people and the township I grew up in has only 9,000 (they have steadily dropped over the years, maybe if I looked when I was diagnosed, they may have had 12,000, lol, I didn't look that hard, remember my head is killing me today) anyhow…that's ONE small town in Michigan on the east side of the state.

I have really felt bad, poor Chris is getting breakdowns every time I turn around, I know its getting to be tap time when I get this way, maybe I can hold out til April and my neuro will Schedule one, if not I will wind up in some random ER, where at least I will get pain meds for a while… my last one was April 2nd, so I am due.

Friday, March 5, 2010

Still not considered a Shunt Candidate and Chiari is said to be TOO SMALL to cause symptoms

While I don't mind not being a shunt candidate, I wasn't thinking I wanted one too badly anyhow, after all in the last two weeks I have seen so many failures that I didn't really want someone poking something into my brain just to make it work less, the concept just didn't make much sense to me.

I would like someone to explain to my Leg, Neck, back and arms, that they are NOT supposed to hurt and be numb since my Chiari malformation is too small to cause my symptoms I have…Oh, and my lungs too, since my apnea is being stubborn lately too. That is all…if it's not large enough to be symptomatic, they must all go away.

When I saw the neurosurgeon this morning, I wasn't sure how I would feel going in, on one hand, I knew I was not prepared for a VP shunt, for some reason I just am not comfortable with them (perhaps it has to do with the fact that on two occasions previously I had been told my ventricles were too small to put a shunt in safely) Well today made the third, but this doc gave a different reason why he didn't feel comfortable putting in a VP shunt, he also mentioned that he does NOT do LP shunts because the failure rate is so High.

I listened to him, To put in a VP shunt he would have to use a Pediatric catheter in the brain section as the adult catheter is actually 1mm larger than my ventricles are themselves, The adult Catheter is 3mm in diameter but my ventricles are only 2mm, since my pressures are so high, the pediatric catheter would likely just collapse my tiny ventricles anyhow and cause the need for repeated surgeries and trauma to the brain that he was not willing to risk since it is not even guaranteed to help (my last tap offered no relief).

Needless to say, I felt relief and frustration all in one, On one hand, I realize he is not familiar with the more complex cases of Chiari like mine (I should have known, most docs aren't familiar with the smaller Chiari Malformations causing issues, and I KNOW all the issues I am having are not psychological.)

On the other hand, I was relieved, because I am not in favor of having a shunt in, especially with the PTC/Chiari combo, I have done too much research on how the shunts fail and cause the Chiari to get worse if they are primary not secondary,