IH Awareness

Awareness begins with someone making a statement. I am dedicating this January as Intracranial Hypertension Awareness Month. Just last Sunday, my pastor spoke on "Developing a Daily Routine." One of the things that he said which really stuck out to me was, "See the 'Power of One.' Everything in the world is made up of 'ones'." A journey begins with one step. A lifetime begins with one breath. Every hour is made up of single minutes. And awareness begins with one person telling another.

In my journey, I have seen others with IH live lives of frustration and bitterness. I have a personal choice to make. I can choose to let this disease ruin my life or I can choose to let God use it to strengthen me and help me to grow. I can wallow in self-pity or I can take a stand and make a difference. I do not want to be one who lives a life of bitterness or self-pity. I would rather follow the examples of Helen Keller, Corrie Ten Boom, or Joni Ericson Tada. These are examples of women who have turned their trials into triumphs.

IH is rare, affecting only about an estimated 1 in 100,000 people. It is most common in overweight women of childbearing age, affecting 20 in 100,000. There is now a Research Foundation dedicated to finding a cure. Although secondary IH (with a known cause) can be dated back to 1597 and idiopathic IH (no known cause) was first diagnosed over 100 years ago, it was not until 2001 that the IH Research Foundation was established. Most people I talk to have never heard of IH. Please join me telling others about this disorder. A great source of information is the IHRF. Their website is:

http://www.ihrfoundation.org/

You can go there for to find out about IH or to make a donation. My hope and prayer is that my little splashes will have a ripple effect. As Pastor Bob said, it starts with just one.

The Spoon Theory

I just read a great story about a woman who has lupus and how she explained it to her friend. It really brings to light the difficulties of living with a chronic illness. Even with my shunt, I have to take care in the things I can and can not do. Just having my pressure regulated does make all of the other symptoms disappear. There are still so many things on a daily basis of which I need to be aware. I would recommend reading this story.

http://www.butyoudontlooksick.com/2006/02/the_spoon_theory.php#more

1 Corinthians 1:20 "Where is the wise man? Where is the scholar? Where is the philosopher of this age? Has not God made foolish the wisdom of the world?"

Those who know me may be surprised to know that for most of my life, I thought that I was dumb, stupid, unintelligent. I can remember Pastor John telling me that I was an intelligent woman (not too many years ago) and I did not believe him. Somewhere along the road, I realized what had led to my poor self image and began to see the truth. I did very well in school and I do have a college degree - not that I get too much use out of it right now. It does not take a college degree to read Dr. Suess!

This leads me to wonder: what of all of the "great philosophers?" Did they, too, ever suffer from doubt. Marx said that "religion is the opiate of the people." Quite a harsh statement. Was there ever a hint of doubt behind those words, or did he truly believe it to the core. For years, I knew how to smile and not when someone would comment on my intelligence, but I never truly believed it. And with all my studies, I think that I learn the most about the love of God through children.

God has made foolish the wisdom of this world. We once thought that we were the center of the Universe and that the earth was flat. But that theory was proven false. Science, you say. Yet how many scientific breakthroughs came from someone seeking out the wonders of God? I think that Darwin gets the raw end of the deal often times by Christians. He set out to prove God and died believing that his theories were wrong. Yet I so often see things like "even Darwin believes now." What "truths" and "wisdom" do we hold fast to now that one day God will make foolish?

New Colors

If you have visited my blog before, then you will notice that I have changed my colors. I chose this color palate to represent the colors for IH which are blue and green.

Ophthalmology Appointment

I went to see my ophthalmologist today. Finally, I remembered to have Andrew drive me. It is not fun trying to drive home with dilated eyes! Anyway, she said that my optic nerve is slightly pale, but that is to be expected with the loss of peripheral vision that I have experienced. She was concerned about my headaches (have I had one for the last three weeks) but said that there was no indication that the shunt was not working properly. This was pretty much what I expected, but good to hear. I know that the headaches can continue even with a working shunt, so it is just something that I am learning to live with. I am comforted to have the assurance that my eyes are fine. I have another visual field test at the end of the month and I go to see Dr. Munoz about every four months. If something goes wrong with the shunt, it would show up rather quickly in my optic nerve, so I am glad for these frequent visits. I gave Dr. Munoz several pamphlets on the IH Registry to hand out to other patients with IH. She had not heard of the Registry, so I was glad to spread the word!

Where Does My Help Come From?

Psalm 121:1-2
1 I lift up my eyes to the hills—
where does my help come from?
2 My help comes from the LORD,
the Maker of heaven and earth.

When I am struggling the most and it seems like I will not make it through another day, I need to remind myself to stop. There is nothing that the Lord will not carry me through. Even in the most difficult of times, He is there to give me the strength I need to carry on. It is an amazing thing. I honestly do not know how anyone makes it through life on their own. I can say with all honesty that I would be dead right now without God in my life. Without the steadfast knowledge that He is my help, I would have committed suicide. But I do have God. I cling to the promises in His Word and know that He is my help.

Happy Shuntiversary!

My shunt turned one on Friday, October 27th! "Spikey," as I call it, has treated me well. It has worked great for the last year and I am praying that it will continue to do so for many years to come. I go to see my ophthalmologist for a check on my eyes in a week. I am still dealing with chronic headaches, among other things, from my Intracranial Hypertension, but my pressures are stabilized. IH is a chronic illness and having a working shunt does not mean that I am "cured." There is no cure for IH and right now, all doctors can hope to do is manage the pressure and treat the symptoms.

In my last post, I mentioned going to a conference in Oregon hosted by the Intracranial Hypertension Research Foundation. The IHRF is "the only organization in the world devoted to finding new therapies and a cure for IH through medical research." There is a way that you can help the IHRF that does not cost you a thing. How many web searches do you do every week, or even every day? Instead of using "Google," or "Yahoo," or any other search engine, go to:

http://www.goodsearch.com/

You can select the IHFR and Good Search will donate a penny for every search to the IHRF. It may not seem like much, but it can add up quickly.

I am so thankful for all the prayers and encouragement from my friends and family. The Lord has been so faithful to me in this time and I can say without any doubt that I would not change the struggles I have been through. It is the challenges in life that force us to dig our roots deep and force us to grow. I am who I am today because of what I have been through.

IHRF Conference

The weekend of October 13th, I had the privelege of attending the first ever conference for Intracranial Hypertension. This conference was hosted by the Intracranial Hypertension Research Foundation in Portland, OR. It was such an amazing experience. I met others with IH and was able to talk to some of the foremost doctors in the field. There was so much information available and I am grateful for the dedication of so many people to seeking out a cure for IH. I must admit, as happy as I am for the Breast Cancer Foundation, every time I see a pink ribbon (and they are all over the place right now), I get a twinge of frustration. Where is the support for those of us who suffer from IH? Where is the funding for research and the companies looking into a cure? There has never been a drug company who has looked into medication specifically for IH and there are no treatment options designed specifically for this disease. The treatment options that are available are only stop-gap measures that "seem to work" but were designed to treat something else. These options may control the pressure and protect vision, but they do not address so many of the other symptoms including the chronic headaches that I still get.

Don't get me wrong, I am grateful that there are even the options that I do have. Some options are better than none. I am just praying for more. So are all of those who suffer from IH. So little is the information available for IH that I met a woman at the conference who flew in from South Africa just for the conference. Her daughter suffers from IH. Others came from the east coast, from Canada, from the mid-west. I even met another gal who lives in Chatsworth and I am looking forward to meeting her for coffee some time soon. There was someone who was going to come from England, but got too sick to travel.

The IHRF did a fabulous job with the conference and they have been so kind and helpful. It was great to meet the Tanne family, who started the foundation. All of this has come out of their search for an answer. I remind myself that any journey must begin with a step. I am confident that as we perservere, the IHRF will gain recognition and funding and someday, there will be a cure for IH. Until then, and after, I will rely daily upon the strength of the Lord.