tag:blogger.com,1999:blog-74239831293976842522012-02-17T14:42:49.775-05:00Zipperhead is an affectionate term for those of us who have had brain surgery to treat Chiari Malformation. For several days post surgery we walk around with very little hair, and many staples up the middle of the back of our head. It really did look like someone just zipped up the back of my head. Since I have also had a cranial cervical fusion as a follow up surgery, I have been a zipperhead two times.Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.comBlogger431100tag:blogger.com,1999:blog-7423983129397684252.post-42500694023314081682012-02-07T13:12:00.000-05:002012-02-07T13:12:10.573-05:00

Well, it seems my blogging runs in cycles with my pain and stress level. It occurred to me this morning that I haven't posted in a while. . . more like four months!!! I'm going to play a little game of catch up, so that you can understand why I have been so neglectful. 1. My last post was about my dear, sweet Ava and her first birthday. I am VERY excited to announce Ava's mommy/daddy are

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-76863907464250985722011-10-20T10:34:00.000-04:002011-10-20T10:34:35.863-04:00

If you have read many of my posts you probably remember my some written about my angel, Baby Ava. She came into this world to teach us all a little something about life, but she was not meant to stay with us for long. Ava Jean Bryan would have turned one this coming Tuesday. We all miss her, love her, and would do anything for her to be with us - but that just wasn't His plan. As this

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com1tag:blogger.com,1999:blog-7423983129397684252.post-31863079192322710142011-10-06T12:15:00.003-04:002011-10-06T12:23:20.023-04:00

I know I promised more detailed posts on our August adventures, but first I there are a few things that have been on my mind . . . 1. I'm thirty-three years old and I will be in pain everyday for the rest of my life. I will wake up in pain, move through the pain (when possible), and then go to sleep with my pain. Each morning the first thought that registers in my mind is, "ouch". I am SO

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-68821938553431209672011-10-03T11:50:00.000-04:002011-10-03T11:50:20.649-04:00

Well, where do I start? I know its been a few months since I've posted, sorry for that, but my pain level went up and my days got busy. I guess I'll start with early August and catch you up . . . August 4 - I had an appointment with my orthopedic surgeon to look my T-8 area of my spine and the pain radiating from it. I had a full body work up last December, so we knew something was wrong

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-50241124438344435052011-07-22T11:18:00.000-04:002011-10-06T12:23:56.494-04:00

My dog, Gordon, is three years old and has always loved the water. He loves to boat, swim, play on the beach - he's a water dog at heart. Gordon is basenji/chihuahua mix, only ways eighteen pounds, is very agile, very fast and very smart. When we adopted him we thought he was a white german shepherd/basenji mix, which would have made him at least fifty pounds, but he's turned out to be

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-23418455634555558072011-07-21T11:44:00.000-04:002011-07-21T11:44:58.529-04:00

For the past few weeks I haven't posted much, I just haven't had much to say. I've never been an anxious person - if you know me, you know I can be stubborn and opinionated, but not anxious. Recently however anxiety has crept in, and I don't like it. Here I am, just trying to have a great summer, but when its time to go to sleep after a long fun day my mind starts to go a little crazy with

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-32172271432014172162011-07-13T11:11:00.001-04:002011-10-06T12:24:49.876-04:00

The past few weeks I have focused on Logan, my husband, my family and having a good summer. I would say so far I have had a great summer, there have been a few moments of stress, but overall life has been very good. (This is where I knock on wood, cross my fingers, and say a little prayer for this to continue.) I don't ever forget how lucky I am to be surrounded by my family, floating in a

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-81626097441098663752011-06-24T23:08:00.000-04:002011-06-24T23:08:44.580-04:00

I have been hesitant to tell you the story of the day I had brain surgery. . . it is a day I will never forget, but would if I could. This isn't the average surgery, its BRAIN surgery! Mine became complicated by a one in a million arterial anomaly, and quickly turned into a nine hour surgery instead of a six hour surgery. If you're a fellow zipperhead you probably have similar memories that

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com1tag:blogger.com,1999:blog-7423983129397684252.post-44072248107639706742011-06-23T13:27:00.000-04:002011-10-06T12:26:10.191-04:00

Logan and I are babysitting my nephew today. He is almost one year old, and very cute. We are really enjoying our time with him, and he adores his big cousin Logan. There is something I have to get off my chest . . . as much as I love my sweet, little nephew, it is sometimes hard for me to be around him. I have always wanted at least two babies, and would have loved more, but so far that

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-13172102505567114772011-06-22T01:07:00.001-04:002011-06-22T01:10:18.132-04:00

It may sound strange to include my eight year old son's favorite authors in the same group as mine, but it in Logan's case it isn't. The end of the year testing for second grade showed his reading level as MUCH higher than his grade level, and frankly, he reads as well as me. Also, I wasn't what you would call a 'reader' before Logan. . . I read to him nightly from birth, but by the time he was

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-61447068877783720752011-06-20T23:03:00.000-04:002011-06-20T23:03:30.417-04:00

Well, so much for my goal of posting everyday. The past few days have been busy, but that's not why I haven't posted. . . it has been raining here for the last four days, so my head pressure has been higher than usual and my head pain has been worse. I've used every extra minute to relax my neck, lay down on my left side and give my head a chance to feel better - unfortunately its hard to type

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-5062674056211095912011-06-16T23:39:00.000-04:002011-06-16T23:39:23.554-04:00

Today was one of those almost perfect days - one that I hope to have many more of this summer. Logan and I were lazy most of the morning, playing cards and watching cartoons. After lunch we met one of my closest friends, Angie, and headed to my dad's for an afternoon on the lake. The weather was not too hot, but warm enough to swim and play in the water. We loaded the cooler, put on our

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-35387836516021486102011-06-15T12:37:00.002-04:002011-06-24T23:10:56.970-04:00

Okay, confession time - I have been making beautiful scarves, and several people have wanted to wear or buy them. I want to start an ETSY page, sell them in a boutique somewhere, or start dyeing dresses, but with my health I worry that it will all fall apart again. I feel like I'm constantly waiting for the other shoe to drop. Throughout my youth I had many medical problems, and several

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-76283694175538398782011-06-14T13:25:00.003-04:002011-06-14T14:51:52.994-04:00

Recently I have been reading several other blogs on a regular basis. One of the regular posts I always enjoy is 'Ten Things Tuesday', so I decided to give it a try myself. I hope you enjoy. . . This is my very first Ten Things Tuesday list so, instead of picking one topic to write about, I'm going to tell you ten things you may or may not know about me. 1. Some of my favorite things are:

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-37607838175643863562011-06-13T12:18:00.001-04:002011-06-14T14:52:42.755-04:00

Before Logan was born I was a nanny for four beautiful boys. I took care of them for about two and half years. . . my first day the boys were 6wks, 18mos, 3yrs, and 4yrs old. Caleb and I were married on this family's property - four acres sitting on the lake where I have boated my entire life, it was an outside wedding under a big white tent, overlooking my lake. We had a dance floor, a good

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-33204825627508769972011-06-08T13:30:00.002-04:002011-06-14T23:39:44.178-04:00

Summer break is finally here and Logan is all mine once again! We're going to swim, play, read, and have adventures together. I truly appreciate that in years to come, not far from now, he won't be interested in spending his summer days hanging out with his mom. It is a gift and a curse all at once to be so aware of the fact that some of my favorite moments in time are growing fewer and fewer

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-77341302570592478852011-06-01T11:08:00.001-04:002011-06-14T14:55:05.399-04:00

I posted recently about some doctor drama I was having, so here's your update: After leaving one doctor due to some very sketchy behavior, and finding another I really liked that abruptly moved to New Jersey, I was set up with a local neurosurgeon that works with Chiari patients. My appointment was good - he was nice, and very knowledgeable. He looked at my most recent scans, did a

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-69452584596045248452011-05-29T22:50:00.002-04:002011-10-06T12:28:08.091-04:00

Today we celebrated the first birthday of our dear friend's son, Cole. Cole's daddy went to school with myself and Caleb, we've known him over fifteen years. He is one of a group of men that has all been friends with my husband and I since high school or before. These guys have been through it all together - parties, sports, girlfriends, breakups, fights, weddings, surgeries, births, and

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com1tag:blogger.com,1999:blog-7423983129397684252.post-3173342064041539112011-05-27T13:52:00.001-04:002011-05-29T23:07:06.334-04:00

Whether you're going to a birthday party, Memorial Day BBQ, or just a cruise on the boat try to enjoy this long weekend, try to appreciate all the blessings that surround you. Think of the men and women over seas unable to be with the ones they love, remember the families sitting in a hospital praying for someone they love to recover, or the child down the street that doesn't have anyone to

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-8563581909766888412011-05-26T09:59:00.001-04:002011-05-26T10:05:02.128-04:00

Less than two weeks until Logan is done with second grade and our summer can begin! Summer has always meant time with my dad/uncle, swimming and boating everyday, lots of time on trails with family/friends and dogs, and long days of sunshine. I LOVE summer!! These are the memories I hold closest to my heart... the moments when my cousin and I were kids and our dads were home full time, we'd

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-17819029267841378462011-05-17T12:24:00.001-04:002011-05-17T21:23:16.788-04:00

All mothers worry. All mothers carry thoughts of guilt, worry, and inadequacy with them every day. One of my biggest source of these feelings is my illness. I worry that being sick will effect Logan in ways I cannot see or cannot help. I cannot imagine what it would be like to grow up with a mother disabled by medical disorders, a mother like me. I worry he will learn to see pain as an

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-33092108105447208612011-05-11T10:58:00.000-04:002011-05-11T10:58:53.906-04:00

I have loved Jerry Garcia since I heard my first Grateful Dead song when I was fifteen years old. I love live music, good guitar, and laid back people. I also love tie dyes:) I love to wear them, I love make them for me, and I love to make gifts out of them. However, as I got older I found some people see tie dye and think, "damn hippies." I started wearing less tie dye and more "grown up"

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-42789547437234068422011-05-04T12:29:00.000-04:002011-05-04T12:29:40.812-04:00

I've been trying to get going again. Trying to get on a healthy schedule of more sleep, physical therapy, meditation, writing, eating well, and staying organized. It sounds so easy, why does it feel SO hard? Sleep has always been a challenge due to my nerve damage, so that is a work in progress. Writing has always helped me clear my head, I have been using this blog and a journal almost daily

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-66633596567310523662011-05-03T09:58:00.007-04:002011-05-03T11:09:49.357-04:00

I'm not exactly sure where to start with all the doctor drama... Until May 2004 I had no diagnosis, and no one would help me. I found the doctors at The Chiari Institute through WACMA and mailed my MRIs to them to be viewed. Within two weeks I got a phone call asking if I could be in NY in two weeks, they could help me! For the first time in the thirteen years I'd been having symptoms I had a

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-85159389501187634522011-04-29T12:42:00.004-04:002011-04-29T14:07:03.074-04:00

Everyday we make choices in life- what to wear, how to raise our children, what to eat, how to spend our money, and the list goes on. Some of these choices are little things, and some are big enough to change your life forever. Many grownups make bad choices bringing consequences that aren't usually wanted, but always seem catch you in the end. Yet there are others that make all the right

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-51369497805860731852011-04-28T22:01:00.009-04:002011-04-28T23:52:51.736-04:00

I've written a lot about my son, and about my disorders, but I haven't written much about my husband. Caleb and I have known each other for seventeen years, (I am 32yrs old and he is 31) have been a couple for over twelve years, and married for almost nine. We met in high school and were friends, but didn't start dating until a few years after we graduated. I am so grateful for my husband. He

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-938112499213137592011-04-21T10:30:00.005-04:002011-10-06T12:29:21.144-04:00

I have written a lot about feeling good about my life in spite of my disabilities and pain. Sometimes I get tired of fighting my pain, and allow myself to stop...stop physical therapy, stop meditating, stop eating healthy, stop icing, stop writing, just stop. These are all things I know will help me, but there are times I just can't make myself do it anymore. I always take care of Logan, that

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com1tag:blogger.com,1999:blog-7423983129397684252.post-30028019788825172152011-04-19T11:07:00.006-04:002011-04-28T17:31:08.362-04:00

The rain is coming down, thunder is rolling, lightning cracking, and the house is dark even though it is almost noon. Today I was going to clean, put away laundry and try to get my house a little less cluttered. As I sit here in pain, pressure rising in my head, I wonder how I will be able to accomplish anything today. All I want is to be a good mother, good wife, and good friend, but sometimes

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-25291265255944147452011-04-17T14:50:00.005-04:002011-04-19T11:06:19.403-04:00

Sometimes it can be hard to be honest with yourself - brutally, deeply, truly honest with yourself. I've known for a long time that my life will be filled with pain, nausea, and the many daily symptoms I endure. I just never really let myself think about what it would really be like to live the rest of my days in this body, until recently.October 25, 2010 Ava Jean Bryan was born. She was

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com1tag:blogger.com,1999:blog-7423983129397684252.post-36697028667096018262010-06-14T10:15:00.007-04:002010-06-14T11:15:54.798-04:00

Logan is home for summer break and I am a very happy momma. The sun is shining, the lake is warm, and we are able to enjoy the boat with my Dad. These are simple things, but they make me happy. My son finished first grade with a reading level of greater than seventh grade, overall functioning he is functioning at late fourth grade - early 5th grade level, all A's - some 100% . . . I cannot

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-45022217692332773222010-05-19T14:20:00.005-04:002010-05-21T14:32:16.519-04:00

Over the past year I have slowly been having increased pain, nausea, vomiting, and some other annoying, daily symptoms. There is a pseudomeningicele, pocket of spinal fluid, built up between the back of my brain and my skull. This pocket is due to having multiple surgeries on the area, and the area not healing in exactly the same shape as before the surgeries. Unfortunately, my surgeon in NY

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com1tag:blogger.com,1999:blog-7423983129397684252.post-42839368710578367522010-05-19T13:46:00.003-04:002010-05-21T14:34:48.124-04:00

I know no one is perfect. I understand we all have our moments. The moment I remembered that I forgot his hat I felt like my heart sink. "Hat Day" in first grade is a big deal - a VERY big deal, and I forgot his hat. I know, Logan had some responsibility in this, but on this morning our house was not a "normal" house. . . Logan woke at 7am, and I was already in the bathroom - puking up last

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-12465050809902381452010-05-03T13:10:00.004-04:002010-05-21T14:33:45.878-04:00

One afternoon when Logan was very young, maybe 5 weeks old, my husband came home to find me a sobbing mess! I was sitting on the couch with my beautiful baby in my arms nursing (a routine I did every two hours for at least 3 months) and balling my eyes out. Caleb asked what was wrong, and my answer seemed a little strange to him. "Someday our son is going to grow up and move out. He'll leave us,

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com1tag:blogger.com,1999:blog-7423983129397684252.post-91412103941332525392010-02-10T10:54:00.002-05:002010-02-10T11:37:28.979-05:00

I realize its been a little while since I've posted - sorry about that. After my trip to NY I was very overwhelmed and in a lot of pain. There was so much excitement I will have to give it to you in two posts. So, here is NY post #1: The reason for our adventure to NY was to see my surgeons. I have been a patient at The Chiari Institute, on Long Island, for almost six years. We arrived on

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com2tag:blogger.com,1999:blog-7423983129397684252.post-91066480590117326382009-09-15T11:34:00.004-04:002009-09-15T12:05:01.971-04:00

Today I feel like shit. My pain level is elevated and it is hard to push through the pain when it is this high. I have been to physical therapy, iced my neck, taken my meds, and used my TENS unit this morning - but, my head is driving me crazy. I do not have time for pain today! My mother, son and I leave for NYC tomorrow morning to go to the Chiari Institute for my eighth trip in the last

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-16068448028588657952009-09-02T12:51:00.004-04:002009-09-02T13:20:34.640-04:00

I cannot tell you how many times someone says to me, "You have an amazing attitude for everything you've been through!" or "All of that and you seem so happy." What am I supposed to do - curl up in the fetal position and wait to die. I appreciate the encouragement, don't get me wrong, but what choice do I really have? This is how I see it: I could wake up every morning, in pain/nauseous, and

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com1tag:blogger.com,1999:blog-7423983129397684252.post-53640528552389465312009-08-28T13:02:00.001-04:002009-08-28T17:35:56.906-04:00

One of the most frustrating parts is finding and accepting my limits. My body will only tolerate so much before it just decides to stop . . . my leg starts to hurt, my cranial pressure rises, my back aches, or a number of other possibilities. I want to do more, I want to go back to work, or be PTO president - but I can't guarantee from one day to the next I will feel well enough to take on the

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com1tag:blogger.com,1999:blog-7423983129397684252.post-65307805253549290102009-08-26T09:41:00.003-04:002009-08-26T10:09:47.236-04:00

I've told you about Arnold Chiari Malformation type 1, but that is not the only diagnosis I have received in the past 6 yrs. . .In April of 2004, after thirteen years of daily, constant symptoms I mailed my MRI's to specialists in NY. They responded in less than two weeks with a phone call telling me to come to NY - they think they can help me. I cried. I was so overwhelmed by the fact that a

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com1tag:blogger.com,1999:blog-7423983129397684252.post-4363223792925212852009-08-25T12:51:00.000-04:002009-08-25T13:32:42.352-04:00

My son, Logan, started first grade last week. To his delight he new several of the children in his class, and he had already met his new teacher several times. I on the other hand was NOT ready for him to start first grade. . . thirty five hours a week without my son?!? For a couple days I seriously contemplated home school, but if you know my son you would understand that he will be smarter

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-3789855344635281482009-04-29T08:40:00.001-04:002009-08-26T10:30:09.896-04:00

I stood on the beach in the hot sun and just watched - I watched the tide roll in and then out again, I watched a sea gull chase a small sandpiper off the sand and into the air, I watched my son search for shells on the sandbar with my father. As I sat and took in my surroundings I thought to myself, "Remember. Remember this moment on the days when the rain won't stop, and I can feel the

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com2tag:blogger.com,1999:blog-7423983129397684252.post-44223870649094657932009-02-27T10:31:00.001-05:002009-08-26T10:18:08.242-04:00

pain is my constant companion,like my shadow it may not be easy to see all the time, but if you look closely you will see it in my eyes.some days it is a pang,some it is agony.this pest never leaves completely,it may rise and fall but it will never cease.pain is like no other cohort,it shows no mercy and offers no reason.only the sharp, unrelenting reminder -no matter where i go in lifemy

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-51436955012149004292009-02-26T10:49:00.001-05:002009-08-26T10:35:04.891-04:00

I have never been a "morning person", but since my surgeries I am even less of one. Each morning I wake up to feel pain before my eyes even open, usually there is some level of nausea, and all of my joints ache. I really dislike morning. Since my son started AM kindergarten my mornings have changed. I try to be cheerful, patient, and of course on time - so far he has not been late to school,

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com0tag:blogger.com,1999:blog-7423983129397684252.post-32720230005277823482009-01-19T15:54:00.000-05:002009-01-19T16:19:23.353-05:00

This is my first blog, and honestly it is more for me than anyone else. My entire life I have been sick . . . constant head pain, nausea, vomiting - I really don't need to get into all my symptoms yet. I wasn't diagnosed until I was 24, married, and had a one year old son. Then someone decides to tell me I need to have brain surgery. My brain was herniated through the whole at the base of my

Jenniferhttp://www.blogger.com/profile/13740791293206228478noreply@blogger.com1