Bad Day

Today has been horrible. On a pain scale of 1-10, i would put today at a 9. This is one of the worst days that I can remember. I have clonzapam and 2- 500/325 Norco's on board every 6 hours. I have been curled up in a tight ball most of the day. Keeping my muscles warm seems to help a little, but little else does. The meds take the edge off but muscles are still so tight.

I have fallen once today and almost fell getting out of the shower. Such a rough day.

2 1/2 weeks after

It's been 2 1/2 weeks after my botox for my hands. I am so frustrated by this round. It really went into the other fingers. I am all thumbs this go around. I am having a really rough time with it. Having to wear elastic shorts most of the time as I can't even button my own shorts is nice but frustrating. Trying to clean is almost impossible. Eh. How about brushing my teeth. Holy cow.

On another note...
When I went to my neurologist for my botox injections in my leg this time, he mentioned considering have restorative neurosurgery. I am just starting to research it.

Actually he was talking about cutting nerves in my legs. Peripheral Denervation is the term. Not much research out there for this procedure in the legs. Seems like most cases are for spastic tortacollis. 

  
Interesting concept but kinda scary since it's permanent.

Latest Botox

Calf muscle pain

I got my last botox injections on April 12. Got both arms and left leg. For the 2 nd time now, i have gotten at 2 months in, these horrible calf pains for a week. My calf muscles were so rigid and tight that I struggled to even walk. It's like having calf cramps for 4 days non stop.

Updates

I am down again sick with my daughter. I am so tired of being sick. Between colds, back pain and the dystonia, I feel like I never catch a break. So, right now, I have been researching the Whole Body Cleanse. http://www.ehow.com/how_2318240_do-total-body-cleanse.html I think it's time to get the toxins out of my system and start to eat healthier again.

I have contacted a friend who works with this type of stuff hoping to find a good homemade cleanse. I want to keep it 100% natural. Crossing my fingers that this type of thing might help. It will be hard to kick the caffeine too. Might have to start easing off it now. Don't want the migraines. Hoping this will help.

Stress

It seems like every time around Christmas, I seem to have more pain. I think this tends to be because of stress. Although I try to keep things very light around the holidays, I think I still do too much. I have a almost 5 year old daughter who now understands what Christmas is about. I am re-living some of the best times of my life through her. Christmas was an amazing time for me growing up and I want to give her everything I had.

However, because of that, I overdo it. I have been having a lot of pain lately. A lot of it stems from my lower back which has been ongoing for months. However, due to my botox wearing off, I have more pain too. And today, I have a throbbing in my right toes. This hurts but adds to my stress as this is how the dystonia first presents itself in new areas. I'm trying not to think this way, but hard not to.

Update on new meds: The Naproxin is taking the edge off the pain but not that much. Just keeps it from making it sharp and intense. Not sure if the Norco helps more than the Vicodin. I wander if the extra Acetaminophen makes a difference.

Anyway, there is my update.

Another development & pain management

Today, I went to see my GP about my blood work. Not that big of a deal. However, we talked about pain management some. I have really been hurting that past year, especially with my lower back. During our conversation, the Dr finally decided to take a x ray of my lumbar spine. And low and behold, it showed something. But what I was hoping he'd find and what it was are two different things.

What he found is more Degenerative Disc Disease ( I have it in my cervical spine C5&C6) we'll now we can add L5 & S1 to that mix. This basically means I have a compressed vertebrae which is pinching the nerves and creating lots of pain and limited mobility. Joy, joy. Then, as with my neck, I also have some bone spurs.

As if the Dystonia wasn't enough of a chronic pain issue, now we get to add this. Talk about pain management. So frustrated and mad right now. I'm so tired of all this pain. I really feel deflated right now. I can't believe how crappy my body is.

Now, I get to add Norco 7.5/325 and naproxen.

Botox on board

Well, I got my latest round of botox last Friday. Everything went fine. Got 465 units between the leg and both hands. We increased the amount within my left hand because of the addition fingers being affected.

My leg is very tender still. Those shots require a 3 inch needle which really hurts and requires multiple injection sites. Ouch!

I will post more as it starts to work.

Botox wears off

So my botox has now worn off. My next appt is June 3.

I have really started noticing the big change. My right hand is curling in very, very tight. And I now believe that the dystonia has once again progressed. My left hand is now curled and starting to twist again. As I sit here typing this my right hand is actually working better than the left. I have only use of my pointer and thumb. Thank God for that typing class in high school. Where would I be without that. Oh yeah pecking one finger at a time.

This has really made me anxious. I am so tired of it spreading. When is it going to end? Where will it hit next. All four limbs plus my tongue. Geez. I never would have thought that I would go through more. It's frustrating and scary for me. I have been totally  stressed out by this. I realize how much it impacts my moods when it acts up or spreads. I have been totally on edge because I'm anxious, scared and frustrated with it.

More leg stuff...

I just got back from a week long cruise where I had some real issues with this pain. It got much worse after I missed a step getting out of the van at the cruise terminal. It was really weird. It was like it vibrated my whole lower leg bones. It hurt like hell. Thank God I had my AFO on. As soon as I could, I had to take a percocet. OMG, it hurt so much. Then it got a little better until I missed another step on the ship. I was in tears it hurt so much. I'm so glad I made sure I had stronger meds than my usual with me on the cruise. I did this one more time - OUCH! Darn dishes on the floor. By the 3rd day, it was almost gone. I still have a little pain but nothing like that before. Geez... rough start.

 As for the amount of botox and if it worked - I gotta be honest and think it was truly worth it (except for the couple weeks of terrible pain). I have always had a horrible time getting it to relax at night in order to sleep. I took clonzapm which sometimes worked, other times NOPE. As for the dosage, I will talk to my doctor about it. I think we can go for less.
It's always an adventure.

Interesting new stuff

So, it's been a painful couple weeks. I was doing pretty good, then all of a sudden the pain hit. At first, it was just the severe nerve stuff in my arms. This is from the bone spurs in my neck. Then my left leg started really hurting. Not sure what's going on there. It hurts on the outside part of the calf. However, it doesn't feel like muscle. Not sure how to explain it. It throbs but then when I walk on it, it really shuts pain. I haven't had any accidents that would cause this. Besides I wear the AFO almost all the time now. So, I have support on it. I just don't get it.

It doesn't have any real impact on how my workouts are going. I still seem to be able to do everything. Only back thing is that I have my leg on ice a lot and have been taking Tramadol and Soma to  help with the pain. Hoping it will ease some before this weekend when I am going on a Mexican cruise for a week. I really want to be able to enjoy it 100%.

Ups and downs

It's now been 3 weeks after the botox. It has been a real transition this time. I have always gotten the botox every 3-4 months and this time I had to wait double the time. Because of that, I feel the effects are more apparent than normal. I really feel the weakness in my fingers. I'm really struggling with smaller things like opening bottles, jars, wrappers, etc. It's a huge adjustment but I will adapt.

In regards to the leg. I love it. No, it hasn't made a huge difference as for the curling and balance. But pain and cramping is so much better. I have been able to go off the Vicodin for the most part. That makes it all worth it. And getting comfy at night is so much easier.

There are always ups and downs with the botox.

Oh and I recently found out that my cholesterol is high. So, now I have to change the diet as well. Had to discontinue my protein shake until I can buy a different one. Way to much cholesterol. I have been dropping a little weight here and there. However, because of all this, I am now sick. My immune system is down with the extra botox and giving up the protein shakes. And due to that, no workouts lately. EH :( Asthma and bronchitis don't make for productive workouts.

Time to get back on the road to health.

Finally the Botox...

Yesterday, I finally received my Botox injections. 400 units in the left leg and 65 units between the 2 arms. This is the first injection in the leg muscles. We'll see how it works out. More later.

Back up and running

I think I'm getting my routine back. I have gone to the gym for 4 straight days. Working out with my trainer as well as in the pool and recumbent bike. Plus, I started stepping it up a few notches in the pool. I started adding the resistance weights and while jogging doing some of the arm exercises.

While putting on my flannels tonight, I looked it the mirror and for the first time ever I am getting the indents in my sides. Now if I could just get rid of the belly fat.

I'm also using an online website to track eating habits. Hoping to change those after this bday cake for Julie. Last of the bdays around here. YAY!

Here we go again...

So, after going off the Zoloft for a couple months, I started back on it yesterday. Poor timing to try going off it. Never go off during the most stressful time of the year, when you have the longest period of time between botox injections and travel. It was a horrible time to try this experiment. So, back on it.

My workouts have pretty much stopped for now. After Christmas, we were gone for 10 days in Missouri, then came home and started on Miranda's bday party. And of course, now I am sick.

Next week, I fully plan on getting back to routine. I need to get back to it. It truly makes a difference in how I feel overall. I have been in a lot of pain. Without the botox, they have been curling a lot. And with the new brace, I have had a lot of pain with that too. My leg cramps up.

But, I keep plugging along.

On Jan 31, I go to see Dr. Ralph for a checkup on how the brace is working, the exercise, check my liver function, etc.

On Feb 3, I go for the botox injections in my hands an left leg.

Personal trainer & Gym

So, I joined LA Fitness at the end of October and then started working with a personal trainer, Allison. Allison has been kicking my butt for 3 weeks now. I work out with her 3x a month. Then I work out on my own another 4-5 days a week on my own. I, currently, work out in the pool for most of my cardio. I run in the pool for about 30 minutes. Some days, I will also add another 20 minutes on the recumbent bike. It's about all I can do without my leg cramping so bad it hurts. It's amazing.

My workouts with the trainer have been incredible. We have been working on building muscle especially since my muscles have started to atrophy. Also, we are doing a lot of core exercises. So far, I have noticed that I'm loosing the jello flabbyness of my arms and upper legs.

A new leaf on life

I have decided to try a new road for my life. On Saturday, I joined a gym to continue my pool workouts. With that membership came a complementary session with a personal trainer. Oops. Yesterday, I had that session and now I am signed up for 3 sessions a month for the next year. That's a little tough on the budget especially since my wife just went through so much to get us a little ahead and now we're back. Yikes. But, this is something that I am very excited about. I have been wanting to get in shape forever. We, of course, are working on things that will improve my quality of life and hopefully get me off the pain meds.

Honestly, I got a little scared when my doctor mentioned that the next step would be a surgery where they snipped nerves in my leg. Time to try turning my life around without modern medication. So, here we are working out 6 days a week at the gym and 3x a month with a personal trainer. Gotta admit that the idea of losing 45 pounds and toning my body really make it worth while too. I would really love to look sexy for my wife again.

Then, energy to play with my daughter without hurting during every move - sweet!

Hope to keep everyone updated.

Changes and figuring out the next step

Things have been really difficult for me of late. Over the last few months while working out in the pool, my left ankle has been hurting. Finally a few weeks ago, I finally had to stop going to the pool for my workout. It finally got bad enough that I took time off. Last week, I got back in only to experience a great deal of pain. I have a knot on the side of my ankle and my Achilles has been hurting a lot. I go to  the doctor on Monday to try to get a handle on this. I have to admit, I am really missing my workouts. I was really feeling good about myself.

On another note, I went to Hockey fest '10 last weekend. During the event, I tested the Power Balance which I really was skeptical of. However after feeling the different, I actually purchased one. And I gotta say, it has made a difference for me. It has helped with my balance.

This is the bracelet.

Achillies tendon

Having tremendous pain in my Achilles tendon lately. To make matters worse, it's the worst Dystonic foot. There is no real relief with it. Very frustrating. I think it was caused by the swimming that I have been doing. Never thought that it would do this. But when you have a foot that curls inward and you are trying to run/walk in the pool, it's got to do unnatural pressure on the tendon. So, it looks like I'll  have to change my workout again.

Going to see my sports medicine primary care dr. on the 20th. Hopefully he will have some good suggestions on how to keep working out without injury.

On another note, the botox spreads again. Very little strength again. So frustrated by it.

Too much botox

So the botox is in full effect now. And oh my, I am very, very weak. I can't even make a fist in my right hand because of the weakness. Once again, it got into my thumb on the right. I can never catch a break there. We thought for sure that it wouldn't creep into the thumb again. Guess time to try something else.