My New Year's Resolution...

Christmas 2011

Everything in life is a choice.

Are you going to choose to live miserable? 

Or

Are you going to live life with happiness and joy and show the world that despite your pain you live life and are a testament of endurance and strength?

My New Year’s Resolution...

Not giving up on HOPE. Having hope for me means taking a good look at where I am in my disease and knowing my limitations. Never giving up hope that one day there WILL be a cure for RSD!

Very few people are lucky enough to find a cure for their pain. For most with RSD, it is a lifelong experience from the onset of the illness. For me it has been two very long years since my RSD journey began.

Some people look at a disability in different ways. For some, their life is over. For others, they mentally wonder how they can live through this. I am focusing on living and finding ways to cope with my pain and get through each and every day without losing my smile!

Having chronic pain and coping with a disability hasn't been easy, I have given up so much. I have learned I now have limitations, and I have to live by. At the age of 34 (going on 35 in two days) this is tough to accept. I have however become more creative and learned how to do things differently in my day to day life to make things not only easier but more fulfilling.

I have to learn that I can't base my life on the things I can't do but what I can do.

I try very hard to look my best and enjoy life as best I can even though the pain is still there. Because of this, many people will confuse this with assuming I am feeling better and doing well. Instead, I hope they see my courage and perseverance!

I am still a person that cares. I have those that I love and that love me. I do have feelings. I do matter. I do have a husband that is my rock and for whom I am trying to live life to fullest with! In 2012 I vow to work hard on not focusing on what I have lost, but on all the wonderful things I have gained, and to NEVER give up hope!

Bring it on 2012!

I hope everyone has a very Happy and safe New Years!

New healing possibilities!

Today brings new healing possibilities... Throughout my RSD/CRPS journey I have been blessed to have family and friends always keeping me in mind when they hear about any type of treatments that may help me find relief and healing. I am very hopeful today is the start of more progress in the direction of healing and remission!

I have my first of 6 to 10 appointments starting today with Angelique Bollettieri DOM, A.P., LMT Doctor of Oriental Medicine. She has recently started treatments using SCENAR-therapy. SCENAR is an advanced form of electrotherapy and may be effective in treating acute and chronic pain.SCENAR therapy functions on two physiological principles: that the body has its own healing capabilities and that it is continually employing processes of self-regulation to maintain health. Scenar (Self Controlled Energo Neuro Adaptive Regulator) is a leading-edge Medical Technology which complements your existing health services.Essentially, Scenar prompt’s the body’s own adaptive processes and facilitates restoration of homeostasis through the release of neuropeptides emanating from the c-fibers' activation; thereby reducing stress and inflammation and effectively relieving symptoms of pain and dysfunction.Scenar is a hand held medical device that delivers non invasive, non toxic, computer modulated, and therapeutic electro stimulation onto and through the skin. It is a biofeedback device involving no drugs and no surgery that aids the body in the self healing process and is FDA-approved for pain relief, muscle re-education and stress reduction.Half the explanation goes over my head, but it is new and anything that can allow a glimpse of going into remission is OK by me!

I have been working very hard on focusing on my blessings and honestly, other than RSD, my cup runneth over. I have been tapping back into my creative side to pass time at home, which really helps keep my mind off the pain. I also have been enjoying a once a week play date with my sister in law, niece and nephew which really brightens my day. Jason and I are better than ever and our sweet Lola turns six next month so although I have never been one to celebrate my pets Birthdays, I think this year we might just make an exception! I will take any excuse to celebrate now days! I am sure everyone will agree with me that Lola will look super cute in a Birthday hat!

I will certainly keep everyone posted on my progress, I know many out there are suffering with pain and this just might be our answer!

Happy Healing!!

The best and most efficient pharmacy is within your own system. ~Robert C. Peale

A day in the life... when pain levels and emotions run high!

My days resemble a tug of war of emotions to be honest. My life has been interrupted as if I have been put in time out and I now have to reevaluated my life plan. I had a plan and I liked it, but now I am being forced to make and accept a new one...gods plan. I guess I was naive to think mine was the one that would happen instead of accepting I only have control over how I accept gods plan for me. I am fighting everyday against my body that is failing me. My head tells me one thing and my body screams another and it gets exhausting not to mention crazy frustrating! I am surrounded by such amazing support and love and that is what keeps me fighting but some days are lonely and I am left only with my thoughts. It's like being stuck in a traffic jam and not having a choice but to wait it out and I don't know about anyone else but to me that is one of the MOST frustrating things!! I just want to turn around go back where I was two years ago and make just one different choice...to call a different Doctor! I can't help but wonder what if?? For now I keep holding on to hope and I will also continue to be grateful for all the wonderful things I do have. I often feel selfish for having the "why me" feelings, but I have to remind myself I am still mourning the life and the abilities I once had and that's OK. More importantly I have to remind myself to keep it together, smile and remember that even though I am hurting I can still find ways to enjoy my life to the fullest, I just have to find and accept new boundaries of what I am able to do. It's peaks and valleys, right now I am in a valley and I WILL hang tight for another peak!



When things go wrong as they sometimes will;
When the road you're trudging seems all uphill;
When the funds are low, and the debts are high
And you want to smile, but have to sigh;
When care is pressing you down a bit-
Rest if you must, but do not quit.

Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you can never tell how close you are
It may be near when it seems so far;
So stick to the fight when you're hardest hit-
It's when things go wrong that you must not quit.

"Don't Quit,"  Author Unknown

If you can't say something positive just don't say anything at all...Well at least that is my goal.

I know I have been gone for awhile but I haven't had much to report and I sometimes feel it is better to just fall off the map for a bit than to complain about my situation. Things continue to be a challenge but I am trying very hard to take it one day at a time.

So, as for new attempts to feel more like the old me, I have recently gone on a low/no sugar diet. After researching how sugar can wreak havoc on our bodies, I decided it was the one thing I could do without a Doctors fee, especially since I am a total sugaraholic! My biggest pain issue is caused from inflammation so I am on a mission to find a way to rid my body/feet of this symptom in hopes of getting some normalcy back in my world. I am so exhausted from pain.

I did start taking an antidepressant to help with my emotions which has been a big help, I resisted the idea of taking it for so long and now I think to myself what the heck was I waiting for! I also started seeing a pain psychologist to help me find ways to cope with all the changes and challenges that I am now going through. I have such an amazing support system, so again I resisted the idea of going to talk with someone, but what a blessing that my mom finally got through to me. Anyone dealing with changes due to physical pain and loss of independence should never hesitate to do this. I can honestly say that before the antidepressants and therapist I was crying daily and wondering what the point of all this is. I wouldn't wish this on my worst enemy! I am trying to see this as an opportunity to grow and learn and I will say that I am learning an incredible amount of patience. I still go to bed every night hoping and that I will wake in the morning pain free so I can get back to everything I love to do. RSD has changed my life in ways that surprise me daily, I may have lost a lot temporarily but I have gained an awareness of my importance to others which I doubted in the past due to my own lack of self worth and I also learned what an amazing man I am married to! Who knew illness and stress could actually make a marriage stronger.

I would encourage anyone who loves someone dealing with loss of lifestyle or independence due to illness or disability and want to understand what it is they deal with to read “The Spoon Theory” by Christine Miserandino. It is a bit of a long read however it truly gives an understanding of how we live our lives day in and day out.

"The Spoon Theory" by Christine Miserandino

I have said it before and I am going to say it again thank you for all the love and support you continue to give me.

I know God will not give me anything I can't handle.  I just wish that He didn't trust me so much.  ~Mother Teresa

Whatsa Watsu?

It has been a couple weeks since the last of the Ketamine treatments that my wife has had to endure, and she has come out the other side, and the fog from the medication has cleared. Under Dr. recommendations we contacted the closest person (St. Pete) that works in a form of hydrotherapy called Watsu. Sounds strange in and of itself, but it holds some merit. Watsu is the combination of Water & Shiatsu. Ta-Daaa. . . Watsu.

Now,  weird as that may sound, the methodology behind it seems normal. A pool is heated to approximately the bodies internal temperature (95°-97° F), and the body responds favorably to the temperature by relaxing and increasing blood flow throughout the body system. Next you have floats placed around your calves that suspend your legs in the water, and the Watsu therapist holds the head just above the water until the ears are submerged. At this stage you have the feeling of weightlessness and the stillness of quiet submersion.
Once the eyes are closed, there is a silent water ballet that transpires and each of the movements stretch and expand the spine and muscle structure. The positives are that gravity is not a factor as the water makes you weightless and the relaxation of the water temp and sound suppression puts you in such a relaxed state that people often fall asleep halfway through the hour of treatment.

Internally : The stress free environment allows your muscles to fully relax and circulation to increase cellular repair.
Externally : The pulling and stretching allows the muscles to be moved and twisted far beyond that of a chiropractor or anti-gravity machines and far safer.

A time frame of 6 months was given until we revisit the Dr. and see if pain thresholds have increased or decreased. While in the pool, after the therapy, Michelle has been able to walk around so her feet can adjust to walking as a normal persons and the lower weight placed on the toe joint should help increase pain tolerance.

We will still be blogging with any new and interesting information on Michelle's quest for normalcy in the land of RSD.

UPDATE : While writing this posting, we  just heard from the Watsu therapist, and while painting a floor she slipped and has broken her elbow. The next closest Watsu therapist is in Naples, so we will be figuring out the game plan for the coming weeks. As you send out prayers for Michelle, please pray the therapist has a rapid recovery to in turn help Michelle with hers.
...and Who Watsu's the Watsuer?

The ship of hope hit by a tsunami...

   Many of you are asking how Michelle is doing, and I wanted to let everyone know that life can truly be cruel. Today is the 4th day of not just her feet hurting almost precisely as they did prior to the Ketamine infusion treatment, but there has been a heaping helping of charley horses all around her shoulders, back, and neck. This does not a happy Michelle make. I am writing on her behalf to let you know that she is in another tough spot. We will be posting more blog updates or posting on facebook when she has something more encouraging to report. Sadly, the insult to injury scenario that is playing out is wreaking havoc on her psyche and we only pray for your patience during this trying time.
She loves you all and appreciates your support, and feels bad that she hasn't been in the frame of mind to respond to all the messages of encouragement from last week or recent texts and phone calls asking how she is doing. I hope to have a more positive report very soon.

Day Four ... Roll the Credits

As with every story, the ending must give way to a new beginning. First I will start with the ending of the Ketamine therapy. Today ( 4-8-2011 )  we had been called into the office after the first breakfast Michelle has had since Sunday morning. Today was Evaluation day! Dr. Kirkpatrick had taken her pain thresholds from 4 specific areas and laid out the pain threshold papers from the days prior, and allowed everyone to see that there have been increases from the 1st treatment. Although she is still to be very ginger on her feet, it showed that if she can continue with his next requests of exercise, there should be a consistent increase of pain tolerance over time.
The Dr. used a great analogy of the Splint. We know that when a bone is broken in half, the two parts are realigned and a splint is used to hold the two together. You cannot immediately start using the bone for support as it needs to heal the connections. Only when all the connections have healed to form the two pieces into 1 supporting unit will it work properly. The Ketamine is the splint. The nerves from brain, and the nerves from the foot need to be separated and then the ketamine lets the brain restart and put the two ends together, but it isn't so simple that everything is miraculously better. The nerves need to be re-blunted and learn again all of the pain and stimulation receptor signals.
That is where the new beginning starts. There is the necessity for hydrotherapy and water exercise called Watsu. Strange name, but it holds the ability for the bottom of the feet to be walked on where the body has almost no weight. The water also holds a lot of healing properties as everyone knows, and now it holds the key to my lovely wife to walking on her foot under the buoyancy of water.
I would love to say that everything has ended, and this Blog was the final stages of Hell that is RSD, for Michelle . We are already looking to Hydrotherapy options for the continuation of increasing her pain threshold and let her mind remember what it was like to walk as normal as it was the many years before.
We were instructed that this should be done for 6 months and since there are ups and downs, we were told to document how long exercise was done for, and anticipate the " exercise hangover " to prove the muscles were being worked and strengthened. One more evaluation after that will determine if the the mind / foot nerves need to be " re-splinted " with another infusion. Another infusion would only be determined after the Dr. sees the improvement made and observes that it would be of benefit.

We would love to say

a special thanks

to all of you 

who have read this blog

and either sent 

facebook messages

 text messages

 or voice messages of

encouragement or support

in this time of trial...

Day Three... The Home Stretch

Three days of legalized Ketamine, very little sleep, and unfamiliar surroundings do not a vacation make.
The Third day started the evening before when the ceiling tiles of the bathroom decided to rain. The last thing we needed was to slip and fall in the restroom late at night so a 10:30 PM call to the front desk yielded only a room change. The room was clean, but sadly that was all it had going for it. The new room was an adjoining room so we could not help but hear the TV and conversation as if it were actually in the room. Now this wouldn't be so bad if it weren't for the person in it locking himself out and spending the next few minutes cursing loudly in the hallway and pounding on the door. His luck changed when he was able to get inside and offer a lighter to a neighboring female, then watch TV at a very high decibel level. Luckily it shut off at about midnight...but then started back up at 5:45 AM.   . . .RISE AND SHINE !

That leads us to the start of getting ready for the 3rd installment of Infusions. We were happy to see the young girl that has been side by side sharing this horrible experience in the lobby, and her Dr. from her home state of Colorado had actually come to see her. We shared a caring and empathetic smile to her and her parents, and wished them luck  and prayers for the day.  We filled out the same paperwork, walked into the same room, and hooked up to the same mechanisms. Here we go again.
Michelle was started at 90mg of Ketamine, then went up quickly to 135mg. That seemed to be the max without putting her into danger of choking on her own saliva. My wonderful wife came through with very elevated blood pressure, but came through nonetheless. Today's movie menu was Couples Retreat for humor and then Bee Movie for light hearted comedy. (who would have thought I would use Seinfeld and Comedy in the same sentence?)
Once the therapy was over, Michelle's emotions ran very high. Raw tears streamed down her face as her confusion overran her sense of reality. After about 1 hour and 30 mins of coming out of the infusion, she was able to get out to the car and back to the hotel.... just in time to move to the new room!
Tonight my brave little woman is resting like crazy and the fog has not cleared from her head yet. Please be patient for her calls back and text messages telling you how much she loves you and thanks you for your prayers.
Tomorrows agenda is a video evaluation to document any objective evidence that things are working and I will be letting everyone know the future path and the view of the finish line for Michelle.
If you have a minute to say a final prayer for her, it will be more than appreciated.

Day Two... What The Shrek?

It was another 9:30 AM appointment, and another round of being plugged into monitoring devices that beep with every heartbeat, and give everyone around you a first hand look at your vital signs.
As with yesterday, there were the typical pain threshold tests, and explanations of the process Michelle was about to succumb to. Today's menu featured all 3 Shrek movies and of course 3D glasses would not be necessary. It was nice to see My mother in law smile at the crazy green ogres and their adventures.

The increased dosage of 136mg of Ketamine had Michelle reeling a little more than normal, and she said she actually felt like she was inside the movies. She was frightened due to her inability to comprehend reality and it had her questioning everything inside her head unable to ask what was real and what was not. The other changes made besides dosages, were the fact that she was able to swish water in her mouth to prevent dry mouth, and a cherry RingPop that she used to stimulate her salivary glands. All of this led to her mouth being much more comfortable, but she said that upon coming out of the treatment, her hands felt like Shrek hands (oversized and heavy).
Currently my little woman is still feeling like everything is moving in slow motion, but she is thanking everyone for their thoughts of love, and she is anxious to head back tomorrow for her final infusion and to get the darn IV out of her arm.

Day one... The Wine Tasting!

This is the husbands eye view for the next few days as my lovely wife tries to endure her first day of ketamine infusion.
Today was considered a "Wine Tasting", and the reason is to get her familiar with the effects during the treatment and what to expect when coming back out of it.
The set up was uneventful and the doctor was able to put in the IV flawlessly and smooth. Then came the Ketamine, and my wife slipped into a sleepy state where every 15 minutes she answered simple and predetermined questions, yet everything else was completely confusing. Her body felt as if it was completely numb and she could hear everything going on around her, yet could not formulate words enough to ask for lip balm. Only the simplest of tasks could be done, and I do envy her as we watched "Cloudy with a Chance of Meatballs" but I saw it just like every time before,  and she saw it on acid!
 While Michelle was still under the effects we put the BluRay of "UP" on the 50" inch HD screen and although trapped in her body, her mind new that she had only a couple hours left to go.
Being put under?...Cake!
The feeling of coming out of the influence?...Cake...slammed into your face by a very mean Clown!
Waves of grogginess and nausea hit her very hard, and at a time when her body was so very exhausted she hardly could keep her eyes focused and hold them still. My poor scared wife was wheelchair bound in the lobby, in tears and confusion. Ginger Ale and Crackers were the comfort foods to help her regain strength but not peace of mind.
We returned to the Holiday Inn and after chicken noodle soup and a 2 hour nap, the color has returned to her cheeks and her appetite is reaffirming that this is something that she can get through.
The prayers of her Family and Friends remain the best medicine to counteract her medication.
Thankfully, Love has NO bad side effects.
Michelles Loco Husbando signing off until tomorrow.

Today the Ketamine journey begins...Tampa here we come!!

Today is evaluation day with Dr. Kirkpatrick and tomorrow we start treatment! I am feeling  very nervous and a lot excited for the outcome! It is sure to be a very long and tiresome week but it will all be worth it in the end! Wish me luck and please send us healing vibes and prayers!

A time to recharge...

A time to recharge...

The beginning 3/27/2005

Before any major achievement begins, a time of reflection is needed. This weekend I was able to reflect on one of the milestones in my life that has made a large scale change. My Wedding day was 6 years ago today, and everyday I count my blessings.

I am thrilled that I am not facing this hardship on my own. I have a loving husband who in this last year has given me the strength and encouragement to hope for a day where I will be ME (Pre-RSD). No matter how long it takes, he is not leaving my side. Six years ago today, I was standing face to face with him saying I DO on an Easter Sunday and this weekend we escaped to a B & B to take time out together reflecting on memories made from our Wedding day till today. Most importantly being the best of friends, and making sure each of us knows that we still love and care for each other. It was great to take time out together making new memories and to reinforce in my mind and heart the care I will continue to get when I head up to Tampa for my Ketamine treatment in 7 days.

Our 6th Anniversary

So for today and the week ahead my attempt will be to focus on the positives in my life like my wonderful husband of six whole years today (YAY US) and not my increasing nerves about my upcoming date with Dr. Kirkpatrick.

The begining of us sharing how RSD has impacted our lives.

My favorite Therapy, Jason, Lola and swimming!

Myself and Jason put this blog together so we could share how we are dealing with our new life with RSD. We will also use the blog to update our family and friends while I go though my upcoming Ketamine treatment and any treatments following. We will both be able to use this as an outlet while we handle the daily challenges RSD presents in our lives.

A special thank you to my Mom and Uncle Joe for suggesting and inspiring us to set up a blog. It was something we never considered, however we are intrigued and looking forward to seeing what this will bring to our lives.

Thanks for being a part of our journey!

P.S. Thank you Karen Smith for being my first follower and one of my biggest cheerleaders!