Monday, September 28, 2009

Recovering from the Walk

I would love to write all about the walk, which was amazing! My team was amazing! It will take some time to get the final numbers. I'll post when I know.

I chose to walk for about 3K out of the 5K. After the walk, we went home. At 3:00 that afternoon, I fell uncontrollably into a deep sleep. Poor Gustavo tried to wake me up for dinner, but I was way out. I woke around 6:30 PM. I still went to sleep at 11:00 that night. The pain has been much increased since the Walk. Same with my POTS symptoms. Feverish at times. And I've just been feeling weak and tired overall.

Gustavo was correct in what he said that afternoon. He said that it's almost a shame that everyone sees me only when I'm at my best, or at least pretending to be. At the walk, I had a lot of adrenaline, and I wanted to make sure everyone enjoyed themselves. So I put on a pretty good show. Unfortunately, this means that people saw the best version of me; not really an accurate representation of living with Chiari. That came later.

Very few people see the pain and sickness I go through every day. The most they might see is a semi-conscious spell or a sleep attack. I really hide any other symptom from people. It's just the best way to maintain positive relationships, from my experience. If you don't hide your symptoms, then you are seen as a "downer," or even a negative person. You have to put that smile on your face.

The aftermath of an active morning:

Overwhelming fatigue. Exploding head. Pounding heart. Dry heaves of nausea. Overall pain. Can't make it up the stairs without resting. Intense, severe sweating spells throughout the night; then awakening with chills. Digestion at a halt. Light-headed. Cannot go without my collar for a moment. Did I mention my head is exploding?

This is how my body is reacting to over-doing it on Saturday morning. Nothing unexpected.

Bonus: my legs are not too sore. I think I've been walking a lot more lately. And the MBT shoes must really be helping to strengthen my legs. Otherwise, I'd be really sore by now.

Plus: I didn't faint at the walk. I'm sorry I had to walk so quickly, but I knew that if I walked at a slower pace, I would collapse or even pass out. I had to just keep moving.

Bedtime now. At least I'm having no trouble getting to sleep...except I need an ice pack on my head. It helps distract my nerves from the enormous amount of pain coming from my exploding brain.

Thank you to all.

There are more thank you's and more details to come, once I'm feeling stronger.

Friday, September 25, 2009

Chiari Walk Tomorrow!!!

I had another mystery virus this week. The fever was terrible, because it made all of my other symptoms unbearable. Thankfully, I seem to be getting better! :)

Just in time for the 2nd annual national Chiari fundraiser: Conquer Chiari's Walk Across America.

This will be my last shameless plug. I promise!

It is too late to register online for the walk. However, they will be accepting registrations at the walk sites, prior to the walk.

In Illinois, that means show up at the walk location in Busse Woods (Grove 5) at 8:30 AM to check-in or register tomorrow morning!

If you can't do that, it would mean so much to me if you could sponsor me. Every little bit counts!

I am so excited to have a team of 24 this year! It means so much to me. Our team name is Courageous Carolyn.

The definition for Courage is as follows:
the quality of mind or spirit that enables a person to face difficulty, danger, or pain, without fear.

I think that is really nice. However, I've changed it a little, to more accurately define how I see it:

Courage is being strong enough to act like it doesn’t hurt, smile through your struggles, pretend you’re not afraid, and keep living as much as you can, despite EVERYTHING!

I used to think that smiling when you’re in pain was being fake. But now I understand that it helps everyone cope with your illness better if you put on a brave face, when you are able. And it does take strength and courage to do so.

Now, I can embrace my team’s name, Courageous Carolyn.

See you all tomorrow at the walk!

Tuesday, September 15, 2009

TIRED BUT WIRED: The Energy Crisis

I've been saving up all of my ideas for posts for some time now, so look below to read all of the latest updates.

For today, I would just say that my constant state is that of being tired but wired. I have symptoms of narcolepsy a lot of the time. So I take medication for narcolepsy. It doesn't always work, so sometimes I take extra stimulants. Sometimes it works too well, so I need a depressant. But in general, I still feel tired, but wired. Not able to sleep (I've developed persistent insomnia). Not able to relax (I have frequent episodes of hypomania, with a need to get things done). But not really awake enough to be useful. I'm still so tired so much of the time. It may not seem like it, because that's how the medication works. If I'm talking, my brain switches on. If I'm listening, my brain switches off. So if I'm the one talking, I feel wide awake. But if I stop talking for some time, like when I drive, my mind tends to turn off, and I am prone to sudden sleep spells or constant yawning attacks.

Obviously, energy management is quite a science. I don't have it perfected yet, as I have chronic fatigue, and yet I seem to be awake until 3 a.m. every night, with the night hours being my most active, usually.

I've also developed an immunity to most sleep medications. Anything with Benedryl does nothing. Ambien does not make me sleep, however it does make me do strange things and then forget about them in the morning. But it doesn't help me sleep. On the other hand, I'm very sensitive to caffeine. I take a half of an excedrine (about 30 mg of caffeine), and it helps me stay awake for most of the day, when combined with 50 mg of Provigil. (Thankfully, Beverly from Dr. Grubb's office was able to help me get my Provigil re-approved, so I won't have to go without it!)

My whole personality is really affected by these drugs. I talk a lot...seriously, a lot. I zone out. I'm crabby. I'm giddy. I don't know if I'm asleep or awake. I feel that I am constantly almost asleep, except for the short bursts of energy I sometimes get.

But I'm still a really great actress. I'm sure most people I encounter on a daily basis are easily fooled by my peppy exterior.

In addition, being more active brings on significantly more pain. I'm to the point where I'm masking severe pain most of the day. So much so, that as soon as I am alone (like when I get in my car), I scream and yell to let out all of the pain that I've been holding inside. I sometimes need to yell or cry for several minutes, because of the amount of physical pain I've been hiding.

Then, there's the end of the day. At the end of the day, whoever is around to see me, usually my mom, is the unfortunate witness to the crash. I am in a horrible mood when I get home from work. I am always convinced that it has been the worst, most painful, most difficult day to get through, ever. So I always dread and fear the valid possibility that the next day will be even more painful and difficult. I'm in a pretty awful mood at the end of each day.

On the weekends, Gustavo is usually the one to witness the crash. I often sleep almost the entire weekend in Milwaukee. He has work to do, but I sleep. The laundry and dishes and cooking need to be done, but I sleep. I sleep, rest, and cry. I'm all used up by then. It's the end of the week. I've worked constantly, and hidden my pain all week. I've fought through the exhaustion all week. So, when I finally get to see Gustavo, when I should be able to enjoy myself, I usually crash. I just have nothing left to give at this point.

It's unfortunate, because I'm always in such a bad mood for the people I care about the most. It's just a side effect of "faking it" all day long, every day. The pain and fatigue and discouragement has to come out sometime. I'm so tired of living this way. And I wish I didn't have to be this way for my loved ones.

But no one can fake it all the time. There is always a crash. The downside always has to come out, eventually. And the more I do during the week, the happier I pretend to be, the harder the downfall.

So, no matter what medication combination is discovered to manage my energy just right, it is still very clear that this surgery is essential and urgent for my long-term well being. You can't fake your way through life. The body eventually gives out. I need this surgery in order to have a life. Until then, I will try to keep faking it. But, there is a point when you can't fake it anymore. I'll do my best to wait until surgery for that. You never know when it's coming. At some point, your body, and your will, just give out. I expect it to happen, and I understand that it will happen. When the time comes, I will know. I've been through it before, when I had to drop out of college. My body will make it clear that I need to stop working for a while and give my body all of the rest it needs. My current schedule can't continue forever. It's like running a marathon. It's an amazing act of strength and will. But eventually, you have nothing left to give. I'll hold out as long as I can. That's all I have to offer.

But if you see me, remember, I'm nearing the end of a very long marathon. I'm using everything I have just to keep going and to put a smile on my face for you.

I really hope this is close to the end. It would be nice to have the finish line in sight. I'm hoping that finish line is surgery in January. But then, we all know that this kind of surgery is really just the beginning of a new marathon, one of recovery! Maybe my time is getting nearer. The day when I won't have to force myself to smile. The day when I won't break down into tears over the severe physical pain I'm hiding. The day when it won't be so hard.

Courage is just knowing how to act like it doesn't hurt, smile through your sickest times, and pretend that you're not scared.

I can't wait for the day that I don't have to be so brave. But I will keep waiting, because apparently, patience is one of those virtues I'm supposed to really learn well.

Swallowing pills

I've been having more and more trouble swallowing pills. It requires me to recline back, arch my back, and drop my chin down and head back. Even then, I often fail. The pill slides back and forth between my throat and my esophagus. This is called dysphagia.

I found something that is very helpful, especially for larger pills with a rough surface. It's called Spray 'N Swallow. It's a pleasant tasting spray oil that you coat your pills with, which helps them go down easier. (I recommend the Wintergreen.) It may not be a miracle. I still have trouble sometimes. But less often, and less trouble. I still need to recline to get a good angle, but I don't need to arch my back so much. I still sometimes have the pill get stuck, but I've found that an extra spray right into my throat can help.

Just a thought, if anyone else is having trouble with dysphagia. I know after my next fusion, the swallowing is only expected to get worse.

Body image problems

So, I'm having some serious problems with my body image lately. Most of it has to do with being "skinny fat", as they call it these days. I'm still a slender person, but I have low muscle mass, and therefore, high body fat percentage. This makes me self-conscious about little bulges I never used to have. Also, having a high body fat percentage (as well as borderline cholesterol) is not healthy. I know I appear healthy. But by now, we must realize that looks can be deceiving when it comes to health.

I don't eat very much or very often, so simply reducing calories won't help me. I'm adding more fruits and vegetables to my diet. I'm also continuing to eliminate hydrogenated oils. (Gross)

It also doesn't help that I take very high doses of salt, which causes the body to retain fluid...which makes me "squishier" than I would be otherwise.

I also often bloat after meals due to poor digestion, exacerbating the problem further.

So, my pants don't always fit, and it makes me hate my body even more.

So, in addition to diet, I've tried to add some exercise to my routine, although it is quite difficult to do this with my busy teaching and traveling schedule, especially if I don't want to cause a setback.

Walking in the MBT's definitely adds muscle and helps me burn more calories when I do walk. Unfortunately, I don't walk all that much.

The other thing I do is some general core exercises to strengthen all the way around my core. I do things like planks, side plank raises, leg raises, flutter kicks, and bicycles. (These exercises can all be found here: I also try to do push-ups, but they are beginning to hurt my wrists. I ordered those push-up handles that rotate to help you do the "perfect push-up".

So, maybe all of this will make my pants fit a bit better. I hope so, because having such a hatred for my body and an increasing obsession with my imperfections is not healthy. I know- I shouldn't care about this. I should just worry about my health. But my health sucks. And even if it shouldn't matter to me, it does matter. I have very high expectations for myself, and it's very frustrating to be able to do so little to improve myself. But I know I'm doing my best, so that's all I can do.

MBT's, my new shoes

So, on the advice of a blogger friend, I bought myself of a pair of MBT's. MBT's are the anti-shoe. They produce an unstable walking surface, which strengthens muscles, challenges balance, improves posture, and absorbs impact. Basically, they do what they're supposed to do. You have to make sure to walk heel to toe to get the most out of them.

The best thing about them is that they activate the leg muscles, even when standing still, making me less likely to pass out, since my muscles are squeezing blood back up to my brain. Awesome!

They're quite pricey, so I recommend trying them on for fit at a local store, then buying them online at a clearance rate. I was able to purchase a discontinued style. It doesn't seem to bother me that my shoes are "so last season".

The MBT's should also be good for EDS, since they strengthen the small stabilizing muscles around the joints. I still can't spend a day on my feet without my futuro knee braces though.

The only thing is, these shoes are supposed to be the most comfortable shoes you'll ever wear. And maybe, if I could have bought the style I tried on, they would be. But I could only afford a discontinued style. And man, my feet really hurt at the end of the day. Maybe it's the style, or maybe it's just that I'm doing more standing and walking than I normally would, so my feet need to get used to it. Either way, foot pain is now a daily complaint for me. (By the way, the shoes feel great for the first hour I wear them. So it is likely just my feet adjusting to the extra use. The shoes are really not the problem.)

If you can't find MBT's, Skechers has come out with a line of shoes called "shape-ups" that are supposed to be very similar. They should be more widely available. But I haven't actually tried them to vouch for them.

New allergist

I saw a new allergist this week. My allergies have been contributing to my misery. My skin gets itchy and looks like it is covered in bug bites. Plus, my eyes and knows get so itchy that I just may rub them off one day. All that, and I'm already on Zyrtec, Optivar eyedrops, Astelin nosespray, and Benedryl as needed. I also use saline nose spray and a Neti Pot at times. Nothing's working...

So, I went back to the allergist, even though the last time I was there, they tested me for everything, and the only allergy I tested positive for was milk. And I am clearly allergic to dogs, cats, grass, trees, and other outdoor things. I saw a new allergist, and he's having me try some new things.

Dr. Handoyo is really great. I switched from Zyrted to Xyzal. I added a nasal steroid called Veramyst. And when things get really bad, I can try Atarax instead of Benedryl (since I'm immune to Benedryl these days). So, at least it's a plan.

He also ordered a blood test, to be sure there isn't any type of immune process going on. I just have to figure out when I can give up some of my blood, considering it makes me weak and faint to lose even one vial.

More doctor's appointments coming this week, including the pain doctor, the ladies' doctor, and the dermatologist. Fun, fun, fun!

Monday, September 14, 2009

New Pain Management Doctor/Neurologist

I've been meaning to post about this for quite a while. I've been seeing a new pain doctor for about 2 months now. I try not to a doctor's name if I have something negative to say, but I only have positive things to say about Dr. Wilkin.

I've had a strong aversion to neurologists ever since a bad experience at Children's Memorial (no need to mention a name here). But Dr. Wilkin is awesome. He is so well-informed and up to date. He actually understands all about Chiari, EDS, and POTS. I didn't know that was possible outside of the Long Island and Baltimore.

He's be trying to help me manage my pain and my fatigue. It's actually quite a saga, so I won't describe every step of the medication experiments. Just the basics:

Tried replacing Provigil with Nuvigil. It was too strong and caused me to have a very scary episode of clinical mania. I'm back to Provigil, and at lower doses.

However, Provigil alone seems to only keep my brain awake...not actually give my body the energy to do anything about it. So, I've added a low dose of caffeine (about 30 mg) to my daily regimen. I'm very sensitive to caffeine, so this actually does a lot for me. When I see Dr. Wilkin next, I will ask him if he wants me to continue on caffeine, or switch to a different stimulant. I think if the caffeine is helping, I should just stick with this. Everyone else is addicted to caffeine. Why not me? And any stimulant will make your heart race. I've already learned that.

The only problem with all of the stimulants is that I am staying up later and later at night. It's getting out of control, with my average bedtime being around 3 a.m. and wake-up at 1 p.m. I have developed an immunity to Ambien, so I'll have to see what Dr. Wilkin thinks I should to about my new insomnia.

Unfortunately for me, my insurance company no longer wants to prescribe me Provigil, because, while I have the clinical symptoms of Narcolepsy, it has not been confirmed by a sleep study. So, we'll have to keep battling to keep getting Provigil. I don't think I could function anymore without it. At least I'm taking a low dose now, so the pills I have should last me a while...hopefully until the insurance company is willing to help me out.

For pain, we first tried Percocet. Unfortunately, I had a bit of a stimulant effect from it. So it also made me manic, without providing enough pain relief.

Next, we tried Ultram. Ultram (generic: Tramadol) is a non-addictive, non-narcotic pain reliever for moderate to severe pain. It has NO side effects (for me), and it truly does help me overall. The only thing it doesn't help with is when my pain level is above an 8. That type of pain truly does need an opioid (narcotic). Maybe Norco, since it is just Vicodin with less Acetaminophen.

I also plan on asking Dr. Wilkin about Trigger Point Injections and Nerve Blocks for my head and neck pain. We'll see if he is up for some needles!

I'll be seeing him again on Wednesday. I'll try not to wait so long to post this time. I've been so manic, that I've suddenly had a lot to get done (bipolar joke...some of you know just what I mean).

Friday, September 11, 2009

IBS pain/bloating

So, getting my gallbladder removed truly made a huge difference in my life. The biggest one is that my chronic constipation is gone. The next is that my list of forbidden foods is significantly shorter.

Unfortunately, with POTS and EDS messing up my digestion, I still do have abdominal pain and bloating about half the days. My theory is that due to my dysphagia, I probably swallow a lot more air than I need to when I eat and drink. It makes sense, because I often inhale my food or water. This is another flaw of the same mechanism. I also strongly believe, after a year of food journaling, that for the most part, it doesn't matter what I eat! I already avoid foods high in fat. And I still follow some of my old rules about how to eat insoluble fiber safely.

If I liked tea, I know that fenell tea would help me greatly. Since I can't stand it, I do take fennel capsules (from a vitamin store) when the bloating is severe.

In addition, I always know that a heating pad can really help reduce the pain of intestinal spasms or bloating. And my gas pains can be quite severe.

So, I'm writing to say that I've found a couple additional methods of relieving abdominal bloating pain. They work for me, but I make no promises that they will work for you.

#1 Abdominal massage. You can google this to learn more about it. But really, it is what is sounds like. When you have trapped gas, it often feels like a very hard and tender spot in your abdomen. It really helps to relax your abdominal muscles and massage these spots. But there are specific ways to do it. There's a good demonstration video on YouTube:

#2 Yoga. Certain yoga positions are really, truly beneficial for bloating. They can be done right after meals, if you've eaten too much, or you feel the bloating coming on. They can also be done whenever else you feel bloating pain. The main poses that are helpful include bends, twists, and inversions. Here are a couple of links about yoga for digestion:
I really think these methods are helpful. They are just so logical. If you keep your abdomen sedentary, it will take a lot longer for the gas to dissipate. If you move your core around in different positions, you are bound to help things get moving in there. Even if you can't get rid of all of the gas or pain, there should be a noticeable improvement. If not, at least it was worth a try.

Hope this is helpful to someone. I know it has become of useful part of my daily routine. With medications, you often can't tell if they are helping or not. But these methods seem to show drastic improvements, almost immediately. These can also help you avoid needing to take extra medications for stomach upset (although sometimes, nothing beats MiraLax!)

*I am not a doctor. This is not a substitute for actual medical advice. Just some extra things you can try to make your life a bit easier. If they don't help, make sure to talk to your doctor!

Labor Day Weekend...ugh

The week before Labor Day was great. My energy was up, so I took advantage of it. In other words: I lived life. I didn't overdo it. Nonetheless, during the weekend, I paid dearly for my living. I was sick straight through til Wednesday, missing work on Tuesday.

My narcolepsy symptoms were the worst they've ever been...falling asleep mid-sentence while on multiple stimulants to keep me awake. It really does make driving a challenge. (Clearly, I do not drive unless my medications are working quite well. So don't worry about that part!)

I also had every other typical cranial settling symptom: arrhythmias, pounding heart, shortness of breath, migraines, fatigue, nausea, achiness, overall sick feeling, etc. This made getting out of bed impossible most of the time. Luckily, I was able to rest much of this time, and I'm getting back to my baseline levels today.

As a side note, my massage therapist is moving to Texas (Understandably, she can't stand the Chicago winters). So, I only have one massage left with her...then I have to see who they find to replace her. Ugh. A good massage therapist is so hard to find...especially with all of these rods and crazy tight muscle knots.

The first of tons of new posts: Chiari Walk

I have been building up a list of blog post topics for some time now. It's just taking me more time than usual to get them written and posted. So, I'll do my best to be efficient. Don't be surprised to see 5 or 10 posts all in one day.

The first thing I must post about is the chiari walk. The date of September 26th is readily approaching. I cannot express how humble and grateful I am that so many people have donated and even signed up to walk! What a wonderful surprise!

The important information is a change of time and location.

The walk is now taking place at Busse Woods (Grove 5). The entrance is on Higgins Rd., east of 53 and west of Arlington Heights Rd. The time has been pushed back to 9:30 (yay!), with an 8:30 registration time. All information about the walk, including the updated flyer and a map of Busse Woods is available here:

Other than that, it would be great to have even more sponsors and walkers. If you are interested, go to the link above. At the top of the page, you can click on "Register to Walk" or "Sponsor a Walker".

If you'd like my personal donation page, go to:

I am truly blessed to have so many people interested and participating in my fight to conquer Chiari, both personally, and in general.

If you have any questions at all, please contact me via email.