09.17.2010

17 days post-operation; WOW. Ok, so honestly, when I posted that "hopefully Danny will be getting on to update everyone one me"... I didn't really BELIEVE IT. Danny, while amazingly good at certain things in life, is not tech-savvy. Honestly, I still have to show him around on Facebook. So - the thought of him logging onto my Blogger, creating a post and then submitting - actually makes me laugh right about now.

Since the surgery - there have been NO symptoms that I had before. I've had good days and bad days, but they all stem around my night of sleeping. Half the time, I just can't go to sleep: house is hot, can't get comfortable, mind is racing. The other half, I go right to sleep, but wake up feeling groggy or sore. But just about EVERY NIGHT, I have these absolutely vivid dreams - that I have actually created a LIFE within my dream. It's a continuous stream of dreams... and no, I'm not on pain medication any longer, so it cannot be the cause of that. Those dreams were trippy and I wish to never go back to them.

Other than my outta-control dreams, I'd say I'm back to ME.

Follow-up nuero appointment is scheduled for next week sometime. But I have already gotten into the car and trained a few sessions. I'm taking it easy for right now.

I have so many things to do with my business... I don't even know where to start.

08.31.2010

Surgery tomorrow... all sorts of emotions are running through my head. It's been a long, but short journey. So thankful to all my clients for their understanding and of course for all my family and friends for their support.

I'm nervous, but I know that I will be fine ♥

Details:

9:30am Admitting
12:00pm Surgery Begins
12:00-4:00pm ish Surgery
4:00pm until Sept 2nd Intensive Care
Sept 2nd/3rd-Sept 5th Regular Hospital Room
Sept 6th-Sept 12th Bed Rest @ Home
Sept 12th-Sept 15th Up and moving a bit more

Danny will be updating the page hopefully to let everyone know how everything is going...

08.13.2010

So I should totally be in bed right now... I actually fell asleep laying sideways on the bed with my jeans + shirt on, then my dog barked and I jumped up... took a shower, and then now I'm up... go figure! LOL

Tomorrow is the Bobcat Adventure Race that I have 8-10 clients participating in. I'm so thrilled for them to be representing Fit For Fashion! It's gonna be a great day. I'm worried though. My body reacts weird to the sunlight and hotness. Plus my "worst" times are from 10-3ish, and the race STARTS at 9am! Eeek.. remaining optimistic.

It's going to kill me not to be running with them... but I don't have much longer to go. Sept 1 is the day of change! I HOPE!

All in all, hanging in there... I feel more "frumpy" than ever with this excess weight and no way of being able to SWEAT. I need to go sit in a steam bath or sauna and just sweat my ickies out. Eating habits are good -- I just have a very little appetite, so I'm trying to get in some good meals here and there. I'm still 3-5 lbs down just from watching nutrition. I just can only imagine how great my body would be if I was able to workout!

08.09.2010

Feeling like crap today. Plain & simple. No appetite at all and I'm having a horrible time swallowing. I can't wait to get rid of all of this for good! I know it's a bad day and I just need to get through it, but I get so frustrated!!

Other than that- just keeping my spirits up.

I'm nervous about having brain surgery... it's a wake up call to see how life is so precious and it makes me think, "have I done all that I can?"... no, probably not. Surgery is at a "5" on the chart of risks, 10 being the highest and 1 being the lowest risk. So smack dab in the center!

Even though I'm overwhelmed tonight, I'm looking forward to a new day ♥

08.06.2010

Had my second opinion today, and the decompression surgery date is SET. Technical term is: posterior fossa decompression. The date is September 1st. I'm still in shock to tell you the truth. I feel confident in the ability of my nuerosurgeon. He has trained under a Chiari specialist so that definitely is admirable. His reasoning for the surgery was that all of my symptoms fall directly in line with the Chiari. In addition, he did a reflex test with my legs -- and it was VERY interesting. He did the patellar reflex [the knee-jerk] and my legs barely moved. Then he asked me to put my chin down to my chest and did it again and my leg went flying!! This just shows how much pressure I have and how it's considerably affecting me.

The details on the surgery from what I've been told:
3 hour surgery
1-2 night(s) in ICU
2-3 additional nights in hospital
1 week bed rest
Driving by the third week

He is 70-90% certain that symptoms will be non-existant after surgery. There are of course a few complications.

I know that this may not be the ANSWER to my problems, but it sure is a step in the RIGHT direction!

07.31.2010

It was a busy morning. I slept through most of the night, only waking up once or twice. I knew I was going to have a busy morning because I had two classes (Boot Camp & Body Sculpting) followed by a mock obstacle course race for my clients. My boyfriend, Danny, set it up for me and it consisted of everything from army crawls to hurdles. The girls loved it! ♥

We had: Crab walks, army crawls under a mesh net, quickfeet tire runs, flipping the 300lb tire twice, weaving through cones, cinderblock hop (laid out cinderblocks and they had to jump from one to the next), rope jumps, hurdles, and an agility (shuffle, backwards run, shuffle) drill with about roughly 2 miles of running.

The moment it was done, stress was released, but then I got a horrible headache. I came back home, and laid down and slept for another 2 hours or so. I'm beginning to feel my stamina build back up, but I just get so sleepy so quickly.

Having some difficulty figuring out my class schedule for next semester. I had to take a medical leave during the Summer, but I need to take at least 9 credit hours to remain on my parent's insurance plan, especially with the chances of having to get surgery in the near future being so high. I would typically be totally fine to take classes but I started to see my grades dropping because of the memory loss, the blanking out, the horrible headaches throughout classes, etc. My parents told me to take only 1 "harder" class and then 2 "fillers" just to get through the semester. So I started looking at what they offer. I do WANT to learn and it kills me that I can't be a normal student and take my required courses.

Danny's aunt has some connections up in Pennsylvania for a Chiari specialist, so I'm going to be sending her over my records/reports and see what he thinks. The fact that I'm so symptomatic and they aren't really budging is starting to make me nervous. I am trying SO hard to remain optimistic. At the studio, I try to act like I'm feeling 150% good. I smile, laugh, and... then go home and let it all out, either with tears, or emotion. It's a horrible cycle. I don't feel as though I'm being FAKE, but I'm trying so hard to push through the fatigue. When I find myself jumbling words and slurring, it's embarrasing. I hate looking at my client who has been coming for 1-2 months, and not even being able to call her by name because I "forgot". And the more my clients improve, I'm soooo proud of them, but then I take a step back, and I wonder... "will I be able to do that ever again?"... going from the 'best shape of your life' to not even being able to curl 5lbs more than 5 times is devastating. But you know what... I will beat this...F' U' Chiari.

07.28.2010

Waking up is getting considerably harder to do, it's so crazy to me. I have Boot Camps at 6am and 7am on M/W/F. I have to set my alarm for 5am, 5:15am, 5:30am to try and roll out of bed.

Everyday I try to learn a little more about my Chiari Malformation to see if I can use the knowledge I have from my school courses in anatomy and the knowledge I have about the body and implement a structured system that works. So that's what I'm working on now. I have been in contact with people as well who are also battling this to see how they are living their lives. Surgery is an option -- however, since I'm newly diagnosed, I'd rather take some alternative approaches and use surgery as a last step because the 'decompression' surgery just horrifies me.

Danny and I signed up for a membership at a small gym facility where they have cardio equipment and are open 24-7. This is perfect for me because since I have become symptomatic and my motor skills and normal gait, etc are decreasing, I refuse to let my body just wilt away. So I've been using the cardio equipment to walk, and try to get in a faster pace walk every now and then. I'm honestly around 5-6 minutes of pure cardio before I need to take a rest. 1 year ago, I was running 5-6 miles! My parents think I need to get my "stamina" back up - so that's what I'm doing now. I can't lift any weights, so I'm utilizing resistance bands and focusing on an all-over body workout. I will also be dropping by the vitamin store to pick up some recommended supplements that will help with my memory loss and nuero issues.

I will be tracking my progress through it all. Thank you for taking the time to follow me on this journey. I'm looking at it as just another obstacle... must keep my head up.

Nutrition________________
2 eggs, scrambled
1 piece of turkey sausage
1 eggo (whole grain)

Snack size- carrot sticks

Salad, mixed greens
Grilled chicken breast topped
Balsalmic vinigarette
Piece of fruit (orange)

Celery sticks
Pudding

Small salad
Tilapia, 4oz
Steamed veggies


Fitness________________
20-25 minutes on ARC trainer
10 minutes (give or take) of resistance band work
10 minutes of Physical Therapy exercises (for 5 herniated discs in neck)
10 minutes of body resistance exercises (lunges, squats, push ups, etc)

*********************************************

It felt great to sweat - that's the TRUTH. I am so thankful that my body was cooperating with me today. I know that it won't always be like that... so I have to take advantage of the "good days". I'm unwinding now before going to teach Boot Camps. Looking forward to kicking my girl's butts and living vicariously through them!

Rainy Days

I got everything squared away with school - so that is a huge load off my shoulders. I took a medical leave and they were very understanding. I'm so thankful. Now I'm working on finding a solid physical therapist... since the NS that I saw recommends that I get some pretty intensive physical therapy to work on my neck, I will need to begin that process. I have some additional appointments coming up next week as well.

Danny and I went to Anytime Fitness in St. Pete and joined their club location. We love Golds, but we rarely used it and I needed a place that is smaller & 24-7 because no telling when I'll feel up for getting in a good walk or bike. I've been told to stay away from anything lifting-wise that is over 5-8lbs. I'M SO BUMMED!!! I love playing around with weights, but that just goes to show that I'll need to focus more on resistance bands and Bosu Balls. I'm thinking of coming up with a workout plan that is "Chiari friendly".

Large storms passing through tonight-- headaches are HITTING ME HARD!! AH.. I'm stuck to the couch with poor Coletta who is so scared. But this will give me time to relax and unwind. :-)

Staying positive even though my pain is pretty intense.... must keep head up.

First Visit

I had my first visit with the nuerosurgeon today -- the results were so-so, he wants me to have physical therapy for 3-4 weeks (2-3 times per week) to see if the cervical herniations that I have are causing any of my symptoms.

I have a second opinion scheduled for August 6th and am looking forward to possibly getting more answers and a more in-depth outlook of what a "course of action" will include.

Fatigue is still prevalent in my life however, I'm trying to remain busy and active. I started a healthy nutrition diet to make sure that I don't gain any weight while exercise is non-existant. I will need to get in some walks, possibly an ellipitcal if possible.

One Day At A Time

One of the weirdest things about having Chiari is that some days aren't AS bad as others. The pain is always constant -- but then in the middle of nowhere, a day will come where the pain is HORRIBLE. This past week, I've had two of those days. One was actually at night (Tuesday night) when I literally could not sleep. I cried myself to sleep because the pain was so bad -- the headaches would not go away and everytime I opened my eyes, the room was spinning. I ended up sleeping on the couch that night propped up in the oddest position. Right next to me was my german shepherd, Coletta, who had no sleep either because she was probably wondering what the heck I was doing on the couch.

Earlier in the week, I got my medical report from the nuerologist to have for my own records. In addition to the diagnosis of Chiari malformation I, he also pointed out that I have herniations in my neck at C4-5, C5-6, C6-7, C7-T1. WHAT? I know I have horrific pain in my neck/back -- but I don't even know how I would have gotten those herniations/bulging discs.

I meet with the specialist on Tuesday -- it's an hour north of my house, but so worth the drive to see a nuerosurgeon who knows about Chiari. I look forward to getting my situation taken care of and moving forward. As the title of this blog goes... One Day At A Time...

Shhh... It's a Secret

I started off by keeping the fact that I have Chiari Malformation a secret to most people. I only told close friends and family because I don't want to gain attention and have people thinking that I'm incapable of doing things. While some things pose a problem for me, I do try to remain normal. My biggest fear was with my clients that they would, for some reason, not want to train with me because here I am, trying to showcase a healthy lifestyle for them, and now I'm unable to workout like I used to. I don't really mind them knowing about my situation -- because eventually if surgery is something that I opt to do, then they will have to figure out that something is up when I don't go in for 2-weeks and have someone cover for me. The whole situation is a double-edged sword.

This weekend has been ok- I feel the brunt of the symptoms today for sure. Waking up is beginning to get harder and harder. So I'm having to set my alarm earlier. I had a mini-breakdown this AM, because I'm so tired of feeling so tired. I am going to get in more walks and maybe some light weights to remain sane. My body has to be going through workout withdrawls. The NY Post put out an article discussing how exercise and the brain are related and how exercise can help. Unfortunately, with Chiari, it only makes symptoms that much worse. Same with driving.

I talk with the NS tomorrow (NueroSurgeon) -- so I'm hoping for some solid information. I have my list of questions to ask him regarding the surgery and recovery. It's time to get moving in the right direction... I can see being symptom-free in my future... just gotta keep taking the steps to get there.

I'm Not Stressed

Yesterday panned out to be a pretty good day, with minimal headaches, and more energy than usual; so I immediately got pumped that the rest of the week would be the same. But unfortunately woke up to a throbbing headache and stiff neck. Other symptoms that crept up today were: ringing in the ears, sensitivity to light, shortness of breath, fatigue & numbness. It's certainly frustrating, but I just have to keep trekking. I remained in bed from 7:30am until 11:30am before getting out of the house (for my sanity) and running a few errands. I am now settling in until clients tonight from 6:00-8:00pm.

My mom insists that stress affects me. I'm sure stress does - but at the moment, I'm not stressed, I'm frustrated - but that's two different feelings. Frustrated because I just want to get better, but not stressed out and holding everything inside. In fact, it 'stresses' me out that she thinks I'm stressed. Go figure.

I was able to get in contact with someone who has experienced Chiari first-hand. She is the mother of a 16-y/o who was diagnosed with Chiari last year. He spent 5-6 months with symptoms, was put on a brief trial of medications, and eventually opted for the surgery (decompression). He is now symptom free. She encouraged me to weigh all options and go forth from there. It was great to hear from her and see that her son had gone through the same symptoms that I am going through now. I'm not one for taking pain medication and going through pain management, because I can see that ruining my life more than just suffering the symptoms. I've already become apathetic- I don't want to be drugged up & apathetic.

Reading through the Chiari forums have helped me to understand the issues, symptoms, and the reasons of why diagnoses can sometimes take forever. I am blessed that Chiari has been found with me and that I am on my way to getting treated properly.

Rain, rain, go away

Put a call into the Nuerosurgeon today to get the scoop on a timeline of when to expect a call back. They said by the week's end. So -- that's that for now. Looking forward to hearing from their office so that I can continue my journey of figuring out all of this. On a positive note, I joined a few "Chiari Forums" for those who have experienced my symptoms and I am happy to see that I have people who understand me & what I'm going through.

No matter what the circumstances, I miss fitness & exercise. I feel like a part of me has been destroyed because I love going for jogs, lifting weights, participating in group activities that are "fitness based" and now... I'm forced to only minimal activity. I have begun to change my eating habits around so that I will still see a decline in the scale. I look forward to taking walks with Coletta (my German Shepherd) & hopefully will not see a further decline in muscle weakness.

A part of me wants to try and push it with exercise, maybe just a 1-mile jog wouldn't be so bad? But I won't allow myself, because I honestly cannot take a worsening of symptoms! Today, isn't so bad. I have the stiff neck & stiff shoulders, but no 'pounding' headache *knock on wood*. I am VERY fatigued though, which is somewhat odd to me since I had 8-9 hours of sleep last night.

With my freezing of school classes and my lowering my clientel base with my business, I figured this time is better than any to pick up sewing again. I'm nervous that my hand/eye coordination will drive me nuts, but if I stay with simple projects (i.e. pants/skirts/etc) then I should be OK. Many people have told me that "God will never give me something that I can't handle" and "Things happen for a reason"... I do believe this. However, it is much easier said then experienced.

Never Give Up

Run when you can, walk when you have to, crawl if you must. Just never give up.

Busy day tomorrow at the Studio, so I'm really hoping for a solid night's sleep and pressure in my head/neck/shoulders to be lessened when I wake up in the AM. Waiting for the call from the Nuerosurgeon to see how we go forth from here.

Life Altering

As I look back on my latest post written on June 11, 2010 - it all starts to come together. The weakness, the fatigue, depression, headaches, nausea, the loss of motor skills, falling, dropping things, numbness, feeling cold all the time... welcome to my life - Chiari.

In fact, Chiari has most likely been with me my entire life but it decided to absolutely deter my life through symptoms within the past 1-2 months and has caused me to look and demand for answers. Throughout the past couple of months, I have been told that Anemia (low-iron), stress, tension, and just a "bug" have been the cause of all of my symptoms. However, a trip to the walk-in clinic and a doctor prescribing a CT Scan has turned my life around.

In the midst of summer classes and overwhelming interest in my business, Chiari - you have not come at the most opportune time. The headaches feel like someone is pounding the back of my head -- I have to leave social settings and relax in dark rooms so that I don't get so nauseas that I vomit. The dark rooms and my symptoms have taken the light from my smile and replaced it with a fake one because who can honestly be truely happy when you feel this bad? I laugh, and it hurts worse. I cry, and it hurts worse. I have become somewhat apathetic to be honest. Casually smiling at something so funny that I would usually end up tearing up from.

I have only told close friends and family about my new friend, Chiari, because I don't want people to feel "bad" for me. I'm a strong person -- so I will get through this, but it's just a pretty significant obstacle. I can't exercise (which if you know me, is my life) -- so I live vicariously through my clients. I feel helpless at times when I start to think about it, because I'm just waiting for doctors to tell me my next move.

So far my timeline has looked like this:

Walk-in clinic --> CT Scan --> Referred to nuerologist & MRI --> Referred to nuerosurgeon

So that's where we stand at this moment. I assume a nuerosurgeon will show me some options and go through all of my symptoms. I have been writing them down daily so that I can show him that Chiari has incapitacted my life, from work to school, to social life and beyond.

I hope to find others who have the same diagnosis as I do. I can usually play on the computer for hours, and now with these headaches, I'm down to about 10-20 minutes max at a time.

Irony

It has been one of those days where one constantly thinks of the past. Not in a bad or good way. Just thinking about life -- and how different things are compared to then. Then you start to think about how you are happy now, but reflect on the idea that you 'thought' you were happy back then too. So which happy is the 'right' happy? I don't think reflecting on the past means that you are unsatisfied with the life you have right now. I believe it's good to look back and reflect on your old boyfriends/girlfriends, your old friends, your old memories. Without those "old" things -- you wouldn't be you, and your life today wouldn't exist.

I enjoy being a busy person and I enjoy challenges -- but I have felt weak and hopeless more in the last week then I have in a while. Weak more so because I don't have the energy that I had before -- whether it's because I've taken on more responsibility now or because of a lack of sleep. I don't feel as "bubbly" as I used to be -- but it's not because I'm not happy. I'm nervous that I'll lose my goofiness self and remain serious, boring, and uninteresting. I really don't want to be the too serious part. I'm hoping that I can get my 'required studies' out of the way in order to let loose a little bit. It would be good for my soul, my mind, and my body.

Cheers to a good week & an even better weekend~