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~