Where do I begin . . .

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 with my T-8 vertebrae and at some point it would need to be addressed. Over a few months I had been having pain around my thoracic spine and that's when I knew it was time. Dr. Joseph Riina is an amazing surgeon with OrthoIndy, an amazing group of docs/therapists/facilities, and he did my 2009 lumbar fusion/discectomy to treat my spinal fracture/herniated disc. When I went to see him in August I could tell there was something wrong just by looking at the films. (You would think after all my MRIs, x-rays, and CT scans I would be good at recognizing a problem - this is only the case when there is something blatantly wrong.) Thanks to the combination of my cranio-cervical fusion and my lumbar fusion I have acquired a seventeen degree curve in my thoracic spine. But the good news didn't stop there . . . my T-8/T-9 vertebra are degenerated significantly causing pain, instability, and early onset arthritis. The bright side: I don't need surgery at this time, my nerves are not being compressed yet, and I can still treat with physical therapy, ice, TENS unit, meditation, yoga and massage. I have found most doctors like and encourage my treatment program, and since I don't like taking meds this works well for me at this time. I must admit since Logan has gone back to school my eating has not been as frequent or healthy as it should be, but that is one of many things that I need to change.

August 5 - Caleb, Logan, and I went to meet Dr. Torres-Martinez at the Riley Hospital for Children Genetics Clinic. After a very thorough physical exam, long family history review, and a brief exam of my EDS it was decided Logan was at very low risk of having my genetic disorders . . . he didn't even order an MRI! Logan is having a heart ECHO tomorrow to check on a "muffle" heard from his heart, and he is to see an opthamologist one more time - but, the big news is NO EDS, NO tethered cord, and most importantly he is NOT considered at risk for Chiari! I could have kissed this wonderful man telling me my son is healthy, and I should not be concerned. Dr. Torres-Martinez also told us that any child I have will have a 50% chance of inheriting the Elhers-Danlos Syndrome gene, which has not been identified so there is no genetic test for it at this time. This wouldn't be good, but I'm not sure it would be a serious enough reason to not have another child? Luckily, Chiari malformation is MUCH lower at around 12% chance of passing on my disorder according to my neuro-specialists in New York and the doctors at Riley Hospital for Children. My surgeons have told me before they do not feel families should refrain from having children due to Chiari, unless it would put the mother's health at risk.

I am SO thankful Logan will not have to deal with my medical disorders!!! I have thanked God everyday of Logan's life for his health, happiness, kindness, and intelligence - I'm not a religious person, but I do believe there is some sort of energy out there, bigger than all of us and I call it God, or the "the big E" as a dear friend once said. I believe things do happen for a reason and I believe something good can come out of most situations no matter how horrible it feels in the moment. Maybe, I am sick to help others learn how to see the light even on the darkest days, or so my son can be healthy and amazing. Maybe, I am here to learn patience, focus, or how to endure hardship and not forget my blessings. I'll never really know, but I do believe we all have a purpose and we are all have something to offer this crazy world.

August 6 - Caleb, Logan, and I head to Clifty Falls State Park in Madison, Indiana. We had a great time on the trails and just spending time together. I'll have to give this its own post later.

August 10 - I turned 33!! I LOVE my birthday, this year I spent my actual birthday on the lake with my dad, uncle, and Logan. That weekend we had a small party at our buddy's house, and then a boat afternoon/BBQ with all the Beems.

August 16 - Logan started 3rd grade! For the first time I made it through day one without crying, but day two there were a few tears. Between school and football I have barely seen Logan since early August! Logan is in the GT classroom, gifted and talented, which is made up of half third graders and half fourth graders. We really like his teacher, we'll call her Mrs. W for blogging purposes, and he likes his classmates - seems to be much less frustrating for him than being in a classroom where everyone is asking him questions constantly or just do things that Logan finds to be ridiculous. I found out recently that Mrs. W has had some of her own experiences with medical world that give her a unique understanding of our family and Logan's life outside the classroom. I hate to hear about anyone having medical problems, but it is very comforting to meet someone that has a true understanding of what my life is really like.

Logan also started tackle football! His team is the Jaguars, they've only won two games, but those boys have SO much fun. I'll post about our junior football adventures later, but had to mention it for my August update.

The end of August brought a family trip to Florida for my cousin Bob's beach wedding.

I'll have to write a whole other post for this because it was a BIG, fun week!

Well, this has been a very long winded post, so I'm going to say goodbye for now and I promise to post regularly again. Unfortunately, the past few months my pain level has been very high and I just haven't felt like doing or thinking anything beyond what is necessary. Now that life is settling down, and hopefully my pain level will go back to a 3 on the daily pain scale so I can continue writing. I'm not sure if any of you really enjoy reading about my life, but this helps me to get out some of my thoughts/stress so thank you for taking the time to read my blog.

As usual, I hope you are having a wonderful day. Oh, I discovered Pinterest.com recently thanks to one of my best friends . . . if you haven't seen it or want to check out my boards go to: http://pinterest.com/beem78/ .

Medical update

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 neurological exam, and talked to me for over twenty minutes. I'm still not sure I would classify it as 'good' news... he said he didn't see any reason for another surgery any time soon, but he also doesn't see me getting any better- ever. He also informed me that the fluid filled area at the base of my head between my brain and skull will never go away or dissipate. Which means, this is my life, forever. I have some control with physical therapy, TENS unit, meditation, and a few other things I have found that take the edge off, but nothing that is going to make me feel truly good. So, as happy as I am to hear that I am stable, and don't need any major treatments, it is hard to hear there is nothing else they can do to lessen my symptoms. I have always held out hope that something will become available that would erase all the pain and symptoms I deal with every second of everyday, but the consensus is I shouldn't hold my breathe... this is it for me.
I know, I know, my life is pretty good. I appreciate my son, my husband, friends and family, but this is the thorn in the side of my optimism - I want to get better! I want to function somewhat normally, I want to work, I want to feel good, I want to have one more baby. These thoughts keep running through my head, I really can't help it sometimes, even though I know I have so much to be thankful for. So, I'm going to give myself a few minutes each day to mourn the life I really want, to get mad that I will never know a "normal" life, and allow myself to be angry that I will be in pain for the next fifty plus years. Then, its time to let go of those feelings and remember how great my life can be when I try to be happy. Being happy really is a decision, a choice you have to make everyday. Life will always hand you reasons to be stressed, but it rarely shows you the way to happiness.
I still have to find the neurologist and rheumatologist I want to work with, but I'll get there when I'm ready. After being with the same neuro/pain specialist for seven years and having it end the way it did just made me a little leery of new doctors. I promise I'll get there, but I'm in no hurry.
So, I'm in pain, nauseous, exhausted, and my joints are swollen (among many other symptoms). Each day is hard. Every morning I wake up, before I even open my eyes the very first thing I feel is pain, and I wonder how I'm ever going to make it through the day. Logan is a great motivator, but its still hard to force myself to move. . . every time I move it takes effort, it hurts, its exhausting. I've learned how to hide it most of the time, mostly when I'm around anyone outside of my husband, son, mom, and dad. Its hard for them, its hard for me, its just too damn hard to imagine this is how it will be for the rest of my days. By the way, I'm thirty two years old, and I've had this pain in my head every second since I was twelve. When I think about it now I wonder how I did it - growing up with constant pain and suffering. Somehow I still found a way to play hard! I grew up riding wave runners, swimming on competitive teams, boating, hanging out with my friends, traveling with my family, and having an all around great life. I've always been able to move through the pain, but as I get older it just gets harder. I wish I still had that never ending energy of childhood, it certainly made getting through the day with pain easier.
I know its hard for most of you to imagine feeling pain of any kind constantly, but sometimes my head hurts so bad I can't even think or talk normally. I don't want you to feel sorry for me, I don't want your pity... I do want you to think of me when someone at work irritates you, think of me when you are on your last nerve with children thinking "there is nothing more stressful than this", or when your cleaning your house dreaming of all the other things you'd rather be doing. Someone out there is praying to be able to do all those things, someone out there is wishing they could just function enough to do the basics of life. Someone out there is missing their child, someone out there is unable to find a job, and God willing that someone will never be you.
As usual the moral of the story is: we all have plenty of reasons to feel stuck, we all have some form of stress, but can you find a way to focus on the best parts of yourself and the world around you?
"The secret of health for both mind and body is not to mourn for the past, nor to worry about the future, but to live the present moment wisely and earnestly." Buddha

Not so good.

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 is not being exactly helpful at this time, and local doc wants to leave it alone, but "treat the symptoms". This means injections, meds, daily PT, possibly a spinal cord stimulator and many more fun possibilities!
Frankly, I'm tired of being sick and tired. I am tired of injections, needles, and tests. I just want to take care of my son, my husband and our home - thats all, not too much to ask is it? At this point, it might be. I am back to limited functioning - daily life tasks are getting harder and harder for me to complete. It is hard for me to want to eat because I don't know what I will actually digest or what will be left for me to puke in the morning. This happens from time to time, my symptoms increase and life sucks for a little while. I will either adjust or it will get better. For now - I have a new doctor I am going to see about injections, and any other ideas he may have. My NY surgeons are currently under investigation (which I will comment on more later) and I'm not sure what that means for me. I am thinking about finding a another Chairi specialist for a second opinion. There is a lot for me to think about right now, and being in pain takes up so much of my energy these days.
Through all this I am constantly aware that this could all be worse... I am able to stand on my own two feet everyday, I am able to be part of my son"s life everyday, I am loved by my husband, my family, and my friends. When I remember all the good things around me it is much easier to make it through the day with a smile.

Today

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 five years. I need to pack, clean, bake, and go to a meeting at Logan's school. . . I don't think it will all happen (; So, the feeling of a hot poker trying to push my left eye out, the pressure building at the base of my skull, and the constant feeling that I need to puke are really making it hard for me today.
This may be the most frustrating part of my disorders (outside of the constant pain)- I have no idea when or where I will feel so bad I cannot function. I may feel great one moment, and then start to feel a slight twinge of pain rising. Next thing I know I'm feeling like shit and what I thought I'd be doing has to wait. (FYI: when I say "feeling great" I mean that my pain level is a 1-3, and I'm not ready to hurl) I appreciate the fact that I can walk, and be take care of my son everyday, but sometimes it all just pisses me off. I want to be able to plan something, and know I will be able to follow through. I want to wake up and not have my first thought be, "my f#%*ing head hurts." So, today I feel like shit and I'm a little mad about it. I think thats okay - as long as I let it go and remember all the reasons my life is amazing.
I am ready to go see my docs and check in. I wish thats all it is - a check in appointment, but I will also have MRI's to look at why my leg hurts at the surgical site for my detether, why I'm vomiting regularly again, and a few other things that have been going on. I'm not ready to hear what they have to say. If they say, "This is all due to permanent nerve damage. This is as good as it gets" that kind of sucks. But, if they say, "we found something, you need another procedure" well, that sucks too. I guess I'll just have to wait and see.
Wish us luck, did I mention we're driving? Oh yes - my mother, six year old, and I are driving from Indy to NYC, Long Island actually. We are guessing 12-14 hours with stops(: I'll post after my appointment on Friday.

Limitations

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 task at hand. Do you know how disappointing that is for me? In my head I can do it all, but my body just doesn't agree all the time.
This was not the plan. I was going to be a great mother, great massage therapist, and amazing wife - then things changed, life happened and the plan fell apart. I know - "the best plans often do", but when its your plan that phrase is NOT comforting.
So, all I can do is wake up each morning and try. I choose to enjoy my life, even though I have plenty of excuses to never leave my bed. I am in pain every second of every day, so some days I have to give in and just stop. Finding and excepting my limitations is an ongoing battle, but most days I win!

Have you ever seen a contortionist . . .

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 doctor not only believed me, but actually thought they could help me. I had been sick for so many years with no compassion, help, or effort from doctors in Indiana. . . in fact most wanted to send me for a psych evaluation. One even asked me "How is your relationship with God?" I stood there dumbfounded and said, "Its not my relationship with God that is the problem, it is my relationship with pain."
When I got to The Chiari Institute on Long Island it was as if the biggest weight in my life had been lifted. These doctors were kind, compassionate, thorough, and most of all they believed me! This group has Chiari patients from every state and 29 countries - these are the doctors The National Institute of Health works with for this disorder. I finally found a place where I wasn't going to be treated like a guinea pig, or a crazy person. I just wanted to be well enough to care for myself and my family.
Over the past five and half years I have received three major diagnosis: Arnold Chiari Malformation type 1 - 12mm (ACM), Ehlers-Danlos Syndrome (EDS), and a Tethered Spinal Cord (TCS).
Ehlers-Danlos Syndrome is simply having too much elastin in my collagen. So, anything that is not bone is entirely too stretchy. All my joints are lax - some would say 'double jointed', my skin is very stretchy, and there are several other signs of EDS. Basically I could be a contortionist. . . it isn't good for my joints to dislocate them, it does cause early onset arthritis and many other issues. I'm not going to bore you with all the problems this disorder has caused me, but it does cause me pain.
The moral of the story is: next time you see a contortionist and you think to yourself "how the hell did they twist themselves into that position?" Now you know.

Zipperhead?

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 skull and hanging out all the way down to my second cervical vertebrae, this is called Arnold Chiari Malformation type 1. Seriously, no wonder my head has hurt every minute of my life since age twelve! So, the lovely photo up above is me seven days post surgery for my cranial cervical fusion, june 2006. I will not be posting any other scary pictures after this one, but if your going to understand why I would call myself "zipperhead" this is a must see.
I really, truly love my life. I am thirty years old, have a great husband, and a six year old son that amazes me everyday. I get to wake up every day and be part of their lives - there are so many people out there much worse off than me. Most of the time this is easy to remember, but some days its a little harder. So, this is for me. This blog is for me to remember on the bad days it will get better. On the good days it will remind me to appreciate how good life truly is.