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IH Awareness

2007-01-18T15:06:00.000-08:00

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

2006-11-21T20:34:00.000-08:00

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

2006-11-08T15:25:00.000-08:00

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

2006-11-06T12:42:00.000-08:00

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

2006-11-06T12:29:00.000-08:00

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?

2006-11-01T09:55:00.000-08:00

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!

2006-10-29T19:20:00.000-08:00

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

2006-10-22T15:29:00.000-07:00

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.

Allergic to Cleaning?

2006-08-16T20:02:00.000-07:00

My mom often says that she is allergic to cleaning. She is, literally. She is allergic to dust and mold. Well, I think that I may be the same. I am starting to feel much better and I do fine with running errands or baking, but when it comes to cleaning, I start to feel sick. My theory is that it is all of the up and down motion. Bending over to pick up laundry or to load the dishwasher or put things away makes me feel sick. Just yesterday, I went shopping with my mom. While we were out and about, I felt fine. But after coming home and spending about an hour to an hour and a half doing laundry, dishes and other cleaning, I felt nautious, dizzy, shaky and I had a migraine headache for the rest of the day. Today, I had the kids help me with the laundry (it never stops, does it?) and I did fine. Go figure!

GoodSearch

2006-08-15T15:56:00.000-07:00

I have added a link to the sidebar for "GoodSearch." If you have not heard of it, it is a search engine much like Google, only GoodSearch donates money to a charity of your choice for every search you make. The Intracranial Hypertension Research Foundation is linked to GoodSearch and you can help raise support just by switching where you do your internet searches. I now use it almost exclusively - it is such an easy way to raise money. Please consider adding it to your bookmarks for your personal searches.

Wisdom in Small Places

2006-08-15T15:42:00.000-07:00

Last night I was putting my son to bed and he showed me insight into God that is far beyond his years. He has been having nightmares (and daymares for that matter) and Andrew and I have been trying to help him through this. We pray with him and sing to him and tell him stories about which to dream. Last night, I was reminded of a song that I used to sing to him every night as well - "God is Bigger Than the Boogie Man" from Veggie Tales. I sang this song and then we were talking about how big God is and how He is there to watch over my son. We talked of how God is sitting on His throne in heaven. My little man looked at me and said, "really, there are two thrones in heaven and two parts of God are in heaven and one is on earth."

That my six year old could have such a grasp of the Trinity amazed me. It is such a great reminder that wisdom does indeed come in small places. -Though he is not so small anymore! :(

Clarification

2006-08-11T09:37:00.000-07:00

I have had several people close to me comment that some of the things I said in my last post seemed, well, out of character for me and like I was trying to point a finger. My phrase "you know who you are," seemed to stand out as somewhat vindictive. I value the opinion of these people and I have really been thinking hard about what they said and why I wrote what I wrote. Yes, i have been very hurt by the words of some people, and I am honestly not sure whether these people will ever read my blog - for various reasons. But as I have pondered and reread my words and tried to understand what I meant, I can tell you that my intention was not to be mean, vindictive or to point a finger. Rather, my intention was to say to my friends who have been supportive, "this is not you, you would know if it was." There are so many people in my life who support me in such incredible ways and I am truly thankful for each and every one of you. And the few that I do not feel support from - they are people that I care about and that I know care about me in their own ways.

Living in Pain

2006-08-07T11:13:00.000-07:00

Most of the people in my life are very supportive, caring and understanding. They laugh with me, cry with me and pray with me. When I stumble, they are there to help me up and when I cannot do anything, they are there to pick up the slack. They encourage me when I am feeling depressed and are overjoyed with me when I am feeling great - even if only for a day. To you, my friends, I say thank you. I cannot express what your support means to me.

It saddens me that not everyone in my life is so supportive. There are those who lay on the accusations, belittle my pain, tell me that I am just plain selfish and that I do not care about anyone else or do anything for anyone else. I have been told that I am a lousy mother, that I am a taker who does nothing for others and I am only smiling when I am taking from others, that I am lazy and that I am not living my life. I have cried rivers over these accusations from loved ones to whom I turn for support. To you, and you know who you are, I leave the following letter. It was posted on the support website that I frequent. Please read it and take some time to ponder it.

LETTER TO PEOPLE WITHOUT CHRONIC PAIN

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand. These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", concentrating, "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

„ Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!¡¨ If you want me to do something, then ask if I can.
In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine.

Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. That isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

Our friendship is one of the most important things in my life.

God's Beautiful Oceans

2006-08-05T18:36:00.000-07:00

Tomorrow for my Sunday School class, I am teaching on how God made the Oceans. It is going to be a fun class and I am excited about it. We are taking the "Design It Yourself" mugs and turning them into aquarium pencil holders. We are going to be putting colored water in them with blue glitter and fishy confetti to make them look like the ocean. I also made Ocean Jell-O - blue raspberry Jell-O with Nemo fruit snacks floating in it and whipped cream mixed in and on top for the waves. I love being creative and coming up with fun ideas. Granted, these are not new ideas, but I came up with the ideas on my own. I have a way of finding some "brand new super cool" thing only to find out that it has been around forever. At least I know that it was a good idea! After all of this, we are going to have some water fun!

A Tale of Two Trees

2006-08-04T10:48:00.000-07:00

I heard a story once about some trees in a biosphere. They grew to a certain height and then just fell over. The scientists were puzzled by this phenomenon. After much research, they discovered the cause. It was a lack of roots. Out in the wild, trees are exposed to winds which forces them to dig down deep with roots to stay standing. In the biosphere, there was no wind and the trees had no root system, so when they reached a certain height, they could not support themselves. Now, a tree in the wild might want to complain about that wind - it is scary and tough and painful. But in reality, the wind is a friend. It is what makes those trees develop routes and gain strength.

Okay, what do trees have to do with living with IH? Well, I was only diagnosed 15 months ago, but I have been dealing with various ongoing medical problems for almost the last five years. I hate it. I just want to be "normal." I am so frustrated with the affect my health has had on my family. But in reality, when I am feeling sane and I stop to think about it, I am thankful for my struggles. They have made me a better and stronger person. I understand so much more than I ever did. Like the tree out in the wilderness, I have faced many terrifying winds. But it is those winds that have forced me to dig my roots deeper. I have had to turn to God and trust in Him. My faith has grown exponentially in these times. I have been reminded that I am not the only one who has suffered hardship.

It is a daily struggle to dig down and develop my roots. There are times when I feel sure that I will be blown over by the hurricane gales. But the Word of God is TRUTH and

"I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:38-39

My IH Story

2006-08-02T17:13:00.000-07:00

In April of 2005, I was diagnosed with PTC (Pseudotumor Cerebri) also know as IH (Intracranial Hypertension). It started when I went in for a routine eye exam. I have had this Optometrist for almost 20 years now. He noticed that I had blurred disc margins and told me to go and see my doctor right away. I had been having symptoms, but I did not really notice them until after this appointment. I was having headaches, seeing spots, shaking often, and having episodes of tunnel vision. I had been sick and thought it was just that. For six weeks, I was unable to drive due to vision problems. My good friend, Melissa, was a huge blessing to me during this time.

Diagnosing IH tends to be a long process for many people, mostly because it is a diagnosis of elimination. For me, the diagnosis came rather quickly. My eye doctor appointment was on March 12th and on April 5th I was given my diagnosis. A spinal tap a few weeks later confirmed it. My pressure was 53 (with the normal range being 8-15)! I was put on Diamox, but after one dose, I had ringing in my ears and my neurologist took me off of it. We tried Lasix next, but it only helped minimally.

On August 2, 2005, I went in for surgery to have an LP (Lumbar Peritonial) Shunt placed. The surgery went fine and the shunt seemed to be working great. The headaches for the first week after surgery were horrible - I could barely think, but they eventually subsided. Unfortunately, I developed a staph infection in one of my incisions. It infected the shunt and it had to be removed. I was in the hospital for 4 days and have had to take intravenous antibiotics for an additional two weeks. The doctor put in a PICC line which allowed my husband to administer the antibiotics from home.

After the infection, I went in for brain surgery. This surgery was to place a VP (Ventriculo Peritonial) Shunt with a programmable valve. From what I have read and after talking to my neurosurgeon, ithere is a much higher success rate with VP Shunts. The surgery was on October 27, 2005 and it went well. After I recovered and had an adjustment to my shunt, I had four months where I felt great. I had not felt so good in over five years and had forgotten what it felt like to be "normal." My neurosurgeon has been awesome and has taken excellent care of me.

For the last three months, I have been dealing with ongoing sinus issues. At first, I was convinced that it was my shunt because all of the symptoms were the same. But, thankfully, my doctor ruled out anything with the shunt. The heat has not helped my sinus headaches any and I am still trying to get rid of the sinus infection. I am hoping and praying to get back to "normal" again soon.

On a positive note, I have every confidence in my doctors and I feel like they have taken good care of me. Though it has been a difficult time, I have felt the support of my friends and family. I have been covered in prayer and can honestly say that I have been at peace throughout this entire ordeal. I am realistic. I know that this is something I will have to deal with for the rest of my life, just like my thyroid disorder. Even still, God is watching over me and the prayers I have received have been so encouraging to me. To be perfectly honest, I was not scared about either of my surgeries. It is even kind of fun to say that I had BRAIN surgery. I think that it has been hardest on my husband and children. My husband has had to take up so much slack for me and my kids do not completely understand, they just know that mommy has been sick off and on and cannot do the things she once did.

Well, that is my story, not yet finished, but God's grace has kept me going and sustains me in all things.

Welcome

2006-08-02T09:55:00.000-07:00

Welcome to my blog. This is my first attempt at doing one of these, so it may take me a bit to get going.