So I passed most of my medical testing with flying colors! In some areas, I'm quite healthy. Unfortunately, it's the unhealthy areas that give me a whole lot of problems. But I am pleased to learn I don't have any additional serious diseases or medical problems. No brain tumors, no lupus, no MS, no diabetes and no RA!
What I do have is what I've had for almost four years now, RSD/CRPS and just for fun, the doctors decided to throw in Fibromyalgia. Since there are a lot of similarities, it's hard to tell where one ends and the other begins. So another new medication and another new doctor, but hopefully one step closer to feeling better. At least I've ruled out what it's not, so I can focus on what it is and what can be done about it. And it's not fatal, just really painful and annoying!
I have to admit I feel like karma is biting me in the butt right about now, since I used to think Fibromyalgia was a made up, hypochondriac thing. I used to think that if a person changed their diet (quit eating processed food) and exercised, they would feel better. Well, I'm already known as the "organicy" eater so it's not that, and even though I'm not doing a whole lot of exercise lately, I have been trying to do some on and off only to feel worse for days after. I did start changing my perspective of Fibromyalgia when I first got RSD/CRPS. And now I know just how really real it is!
The only other thing the doctor mentioned yesterday was some degenerative disc disease going on in my neck, which would explain the shoulder/neck pain I've been experiencing. So it's back to the chiropractor for that and proabably no more roller coasters!
So I guess it's research time, gotta learn all I can about Fibro and how to manage it. Maybe some of it will help the RSD/CRPS, too. It's too easy to sit around feeling sorry for yourself when you are in a lot of pain. But I have to somehow, somewhere find the energy to fight back...I just hope there's still some fight left in me!
Melissa Unbleached...On a mission to find peace, happiness and good health!
Tuesday, February 26, 2013
Sunday, February 24, 2013
Tom Petty Was Right!
The waiting is the hardest part! "The Waiting" is the lead single from Tom Petty and the Heartbreakers' album Hard Promises released in 1981.
But I doubt Tom was referring to doctor appointments and test results! Tomorrow I finally find out the results of several tests. Upper and lower body EMG (Electromyography) which was quite painful, head and neck MRI, ANSAR test (a painless, non-invasive diagnostic procedure that determines how well a patient’s autonomic nervous system is functioning*), and a ton of blood work.
All these tests were ordered and evaluated by neurologists at The Andrews Institute, a state-of-the-art, world class institute for orthopaedics and sports medicine facility. Honestly I submitted to these tests to rule out any additional conditions other than RSD/CRPS so I could make the best treatment decisions for my RSD/CRPS going forward. Now that it's come down to the final hours, I'm worried I could have other issues. Of course I know it's probably just my mind playing horrible tricks on me. I've been pretty stressed out the past few days as the appointment has gotten closer.
Of course stress is one of the worse things for RSD/CRPS but since I don't have any valium, it's up to breathing exercises to bring my heart rate down. And I'm accepting all prayers!
Whatever the news I get tomorrow, I know I will have the best doctors to handle it. And I know I will be strong enough to get through it because I've gotten farther through RSD/CRPS than I ever thought I would. I have a strong support group of family and friends.
*From the website: http://www.tlcdiagnostics.com/patients/tests-and-procedures/ansar-testing
But I doubt Tom was referring to doctor appointments and test results! Tomorrow I finally find out the results of several tests. Upper and lower body EMG (Electromyography) which was quite painful, head and neck MRI, ANSAR test (a painless, non-invasive diagnostic procedure that determines how well a patient’s autonomic nervous system is functioning*), and a ton of blood work.
All these tests were ordered and evaluated by neurologists at The Andrews Institute, a state-of-the-art, world class institute for orthopaedics and sports medicine facility. Honestly I submitted to these tests to rule out any additional conditions other than RSD/CRPS so I could make the best treatment decisions for my RSD/CRPS going forward. Now that it's come down to the final hours, I'm worried I could have other issues. Of course I know it's probably just my mind playing horrible tricks on me. I've been pretty stressed out the past few days as the appointment has gotten closer.
Of course stress is one of the worse things for RSD/CRPS but since I don't have any valium, it's up to breathing exercises to bring my heart rate down. And I'm accepting all prayers!
Whatever the news I get tomorrow, I know I will have the best doctors to handle it. And I know I will be strong enough to get through it because I've gotten farther through RSD/CRPS than I ever thought I would. I have a strong support group of family and friends.
*From the website: http://www.tlcdiagnostics.com/patients/tests-and-procedures/ansar-testing
Saturday, February 23, 2013
Battle of the Bulge
I've been in a battle with weight as far back as I can remember. In middle school, I wore a jacket all the time to hide my waistline and we're talking in Georgia...year round! Do you know hot it gets down here? And looking back at old photos, the only thing that looks worse than my waistline is me wearing a jacket with the sleeves pushed up in August!
About a year or so ago, I set a goal for myself to have conquered my battle with weight before I turn 40, no more yo-yo dieting. But now with that date increasingly closing in and the scale barely moving each week, the odds are not in my favor to reach my goal weight by my 40th birthday. Granted, I've had some major road bumps but there were times I had choices and I made the wrong ones.
The summer before I injured my foot, I was going to do the "Couch to 5k" training workout. I did the first workout once...just once. I was pretty good about walking, I just never enjoyed extreme cardio or running. And then there's food. I love to eat! And in this super size world we live in, portion control is easier said than done. If you don't get a big fat serving at a restaurant, you feel like you've been ripped off, like you're not getting your money's worth.
Now I can't do any high impact exercise because of my foot, even walking is difficult and I'm easily fatigued. But I've been doing Weight Watchers online and having decent success with it considering I'm not exercising. We've been making their recipes and they are actually very good! They are easy to make, simple and fresh ingredients and taste great. Even Tony likes them, he just eats bigger servings. And I've gotten a better handle on portion size by measuring everything. People think, "oh I'll just have one of these, a couple of those.." but it all adds up!
So maybe I will have conquered my battle with weight by May 10th! Maybe I won't be at my goal weight yet but I'll be on my way and never going back. I've accepted that Weight Watchers is probably something I am going to need for the rest of my life and if it helps me eat right, keeps my weight under control and keeps me healthier, then it's a great weapon to have in my arsenal. And I can finally throw that yo-yo away!
About a year or so ago, I set a goal for myself to have conquered my battle with weight before I turn 40, no more yo-yo dieting. But now with that date increasingly closing in and the scale barely moving each week, the odds are not in my favor to reach my goal weight by my 40th birthday. Granted, I've had some major road bumps but there were times I had choices and I made the wrong ones.
The summer before I injured my foot, I was going to do the "Couch to 5k" training workout. I did the first workout once...just once. I was pretty good about walking, I just never enjoyed extreme cardio or running. And then there's food. I love to eat! And in this super size world we live in, portion control is easier said than done. If you don't get a big fat serving at a restaurant, you feel like you've been ripped off, like you're not getting your money's worth.
Now I can't do any high impact exercise because of my foot, even walking is difficult and I'm easily fatigued. But I've been doing Weight Watchers online and having decent success with it considering I'm not exercising. We've been making their recipes and they are actually very good! They are easy to make, simple and fresh ingredients and taste great. Even Tony likes them, he just eats bigger servings. And I've gotten a better handle on portion size by measuring everything. People think, "oh I'll just have one of these, a couple of those.." but it all adds up!
So maybe I will have conquered my battle with weight by May 10th! Maybe I won't be at my goal weight yet but I'll be on my way and never going back. I've accepted that Weight Watchers is probably something I am going to need for the rest of my life and if it helps me eat right, keeps my weight under control and keeps me healthier, then it's a great weapon to have in my arsenal. And I can finally throw that yo-yo away!
Monday, February 18, 2013
Runners World - Records & In their Own
The canopies have been taken down, the record keepers and runners have packed their bags and moved on as life on the beach in February returns to normal.
The events of the weekend were a great success! Around $45,000 was raised for the Special Operations Warrior Foundation and the world record for the longest run in the sand in 24 hours was blown away! Previously 83.04 miles, Joe Fejes, age 47 from Georgia, took the title with 134 miles. Connie Gardner, age 49 from Ohio, took the women's title with 116 miles.*
I was there when the 24 hour runners made their first lap, but due to the cold and windy conditions, it was time to head inside for the evening. Sunday at noon I was back out on the beach staffing the aid station as the 24 hour runners made their laps and offering water, snacks and restroom privileges to the 50 mile, 50K and Relay runners as they passed in both directions. It was a beautiful, sunny day but still pretty chilly (I had on a long sleeve t-shirt, hooded sweatshirt, jacket and gloves). The runners, of course, were wearing much less and it appeared fluorescent was the color scheme of choice and matching outfits were not encouraged. I suppose that's how they express themselves with their "flare." There were also some tourists, either brave or not very smart, who were actually in the water. How they didn't develop hypothermia is beyond me!
Running has it's own little subculture. They know the lingo, have specific diets, dress similarly and typically travel in packs. These runners definitely have some of the most determined will power I've ever seen. How they push on through pain and extreme exhaustion is amazing. It makes me think that we humans must all be wired differently, there's no way I could have that kind of will power. Even before my injury.
I guess that's why not everyone is a runner. And that's ok, I shouldn't be down on myself or compare myself to other people. There has to be something that I'm meant to excel at, something that is my "running." I'm still trying to find my place in the world since my RSD/CRPS diagnosis. Maybe it's time I get help with that, maybe it's not something I can do on my own. I have an appointment in April with someone who should be able to help me sort through all the changes this disease has brought on and how to adapt to my new life, I'm looking forward to getting some help because as much as I want to, I cannot do it alone.
Anyway, it was an honor to play a role, albeit a very small one, in such an awesome event! Already looking forward to next year's Destin 50 and hoping for warmer weather.
*From Northwest Florida Daily News http://www.nwfdailynews.com/
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| 24 Hour Sand Run |
I was there when the 24 hour runners made their first lap, but due to the cold and windy conditions, it was time to head inside for the evening. Sunday at noon I was back out on the beach staffing the aid station as the 24 hour runners made their laps and offering water, snacks and restroom privileges to the 50 mile, 50K and Relay runners as they passed in both directions. It was a beautiful, sunny day but still pretty chilly (I had on a long sleeve t-shirt, hooded sweatshirt, jacket and gloves). The runners, of course, were wearing much less and it appeared fluorescent was the color scheme of choice and matching outfits were not encouraged. I suppose that's how they express themselves with their "flare." There were also some tourists, either brave or not very smart, who were actually in the water. How they didn't develop hypothermia is beyond me!
Running has it's own little subculture. They know the lingo, have specific diets, dress similarly and typically travel in packs. These runners definitely have some of the most determined will power I've ever seen. How they push on through pain and extreme exhaustion is amazing. It makes me think that we humans must all be wired differently, there's no way I could have that kind of will power. Even before my injury.
I guess that's why not everyone is a runner. And that's ok, I shouldn't be down on myself or compare myself to other people. There has to be something that I'm meant to excel at, something that is my "running." I'm still trying to find my place in the world since my RSD/CRPS diagnosis. Maybe it's time I get help with that, maybe it's not something I can do on my own. I have an appointment in April with someone who should be able to help me sort through all the changes this disease has brought on and how to adapt to my new life, I'm looking forward to getting some help because as much as I want to, I cannot do it alone.
Anyway, it was an honor to play a role, albeit a very small one, in such an awesome event! Already looking forward to next year's Destin 50 and hoping for warmer weather.
*From Northwest Florida Daily News http://www.nwfdailynews.com/
Saturday, February 16, 2013
Fit-Less
.JPG "Son of a Beach Athlete Challenge") |
| Athlete Challenge |
- College Scholarships for the surviving children of fallen Special Operations Forces
- Family Services, including educational counseling
- Wounded Special Operations Forces Support"*
There's been several events today:
- Individual 50 mile run (military and civilian categories)
- Individual 50K run (military and civilian categories)
- Relay
- Son of a Beach Athlete Challenge (Elite male/female & Open male/female)
.JPG "Son of a Beach Athlete Challenge")
- 24hr Sand Run - 6 runners will attempt to break the individual Official World Record for "Greatest Distance Run on Sand in 24 Hours" as certified by Guinness World Records (83.04 miles*), Camp Gulf just happens to be the turn around point!
I went to a local restaurant and sponsor of the event, The Back Porch, and watched part of the Athlete Challenge. It was amazing to see how in shape these people were and how far they pushed their bodies. At first it was inspiring and then it became a little depressing for me since I am very limited in what physical activity I can tolerate. Yes, it is technically my ankle that's damaged but since my body stays in a constant state of fight-or-flight due to a confused sympathetic nervous system, getting my heart rate up and/or doing strenuous exercise affects me differently than it used to and I have to be very careful. The last time I did cardio, I thought I was having a heart attack and was wiped out for about a week. I've decided to take it a lot more easy doing mostly stretching, Pilate's and tai chi. All I can say is I wish I would've been more fitness conscious when I had the chance. Now I'm just a spectator and it's easy to get bitter and angry but it's not any body's fault this happened to me.
So I was out there cheering on strangers at the athletic challenge and I will be cheering on the six 24hr Sand Runners. And if you're out there reading this and you have the opportunity to start an exercise program whether it's joining a regular gym, buying a Beachbody workout video series, participating in a Crossfit program or whatever fitness option you have, go for it! There's those of us out here that would love to be able to do it and physically can't.
But back to the 24hr Sand Run, it's almost time to get started so I've got to go get bundled up because it's COLD! We've had great winter weather down here for weeks but of course it decides to get cold this weekend with the low going down to about 35 degrees tonight and that's not including the wind! I guess the 24hr runners won't mind but the spectators and record keepers will probably be a little chilly!
*From the website Special Operations Warrior Foundation http://www.specialops.org/
Wednesday, February 13, 2013
Beautiful Distraction
Deep down I knew playing video games would pay off someday! The very thing that has been criticized for generations keeps me sane and allows me to function somewhat normally with a sometimes debilitating mental and physical condition.
They say chronic pain is all in your head and it is...literally.
"The problem comes when the original injury, the site (in my case the ankle), has healed. Once the appropriate amount of time has passed, RSD/CRPS says NO! It still wants to keep sending signals saying the injury is still happening, still going on, and that particular part of the body is still under attack.
This is when the problems really set in. Many times, depending on what stage the patient is in, there may or may not be outward signs of the disease. But regardless of what is showing on the outside, on the inside, in the brain, the pain cycle is stuck in the firing position where it is continuing to fire repeatedly. The brain believes that the injury is still active, still there so you, the patient, believe you are still hurting because you are feeling the pain! The injury is real to you because the pain is real!"*
Other than the 8 lumbar sympathetic nerve blocks I've had (picture large needle in lower back) and anywhere from 4-6 medications at a time ranging from antidepressants to beta-blockers to narcotics, the only thing that's successful at taking my mind off the pain has been playing video games. Not TV, movies, work, or even a good book have been able to do what an engaging game of Age of Empires Online has been able to do! So it's been a great tool for me in coping with non-stop, 24 hour a day pain.
We all know pain hurts but I don't people are fully aware of the mental and psychological implications. Obviously chronic pain causes depression, but there's also sleep disorders, trouble concentrating, anxiousness and irritability. And it can all be just so overwhelming and sad. Then I sit down and get involved in a game, and at least for a little while I can block most of it out, focusing on the game's objective instead of how drastically my life has changed and how bleak my future looks.
So until there's a cure or a treatment that puts my RSD/CRPS into remission, don't think it's weird if I prefer to sit inside on a beautiful day and play a video game.
*From the website American RSDHope, article "CYCLE OF PAIN OF CRPS OR MECHANISM OF RSD" http://www.rsdhope.org/crps-cycle-of-pain-diagram.html
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| RSD/CRPS Cycle of Pain |
"The problem comes when the original injury, the site (in my case the ankle), has healed. Once the appropriate amount of time has passed, RSD/CRPS says NO! It still wants to keep sending signals saying the injury is still happening, still going on, and that particular part of the body is still under attack.
This is when the problems really set in. Many times, depending on what stage the patient is in, there may or may not be outward signs of the disease. But regardless of what is showing on the outside, on the inside, in the brain, the pain cycle is stuck in the firing position where it is continuing to fire repeatedly. The brain believes that the injury is still active, still there so you, the patient, believe you are still hurting because you are feeling the pain! The injury is real to you because the pain is real!"*
Other than the 8 lumbar sympathetic nerve blocks I've had (picture large needle in lower back) and anywhere from 4-6 medications at a time ranging from antidepressants to beta-blockers to narcotics, the only thing that's successful at taking my mind off the pain has been playing video games. Not TV, movies, work, or even a good book have been able to do what an engaging game of Age of Empires Online has been able to do! So it's been a great tool for me in coping with non-stop, 24 hour a day pain.
We all know pain hurts but I don't people are fully aware of the mental and psychological implications. Obviously chronic pain causes depression, but there's also sleep disorders, trouble concentrating, anxiousness and irritability. And it can all be just so overwhelming and sad. Then I sit down and get involved in a game, and at least for a little while I can block most of it out, focusing on the game's objective instead of how drastically my life has changed and how bleak my future looks.
So until there's a cure or a treatment that puts my RSD/CRPS into remission, don't think it's weird if I prefer to sit inside on a beautiful day and play a video game.
*From the website American RSDHope, article "CYCLE OF PAIN OF CRPS OR MECHANISM OF RSD" http://www.rsdhope.org/crps-cycle-of-pain-diagram.html
Tuesday, February 12, 2013
Ready To Party!
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| avaSKIN |
There's just one problem, being the most unsalesmanlike person in the world, I've yet to book a single party. Living far away from my family and friends doesn't help. And dealing with a particularly painful CRPS/RSD week has definitely thrown me off my game, because unless you've lived with chronic pain, there's no way you could understand how exhausting, distracting and depressing it can be. Just my luck that I take on a new business venture and my foot/leg pain flares up to new heights. I guess I should look at it as a challenge...
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| 6 Piece Travel Size Kit |
Next step is to have my first home party, guess I better get to filling out those invitations!
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