Tuesday, March 25, 2014

4 years and counting...

Tomorrow March 26th marks the 4th anniversary of my RSD journey; needless to say this isn’t exactly a happy time for me. I do feel proud of all the progress and accomplishments I have made but that doesn't make me any less sad about all I've lost and all that has changed for me and for my husband. Jason is my rock and I think that is why today I sit here feeling so confused. I should be feeling so blessed and happy because the very next day after my RSD Anniversary is my 9th Wedding Anniversary and that is something to be so HAPPY about! I sometimes can't believe how time flies and when I look at Jason I am so thankful it has flown by with him. Through the good and the bad he's been my best friend and he makes me smile everyday no matter how I feel. He is the BEST husband and that is the Anniversary I should be focused on, so why do I feel so sad today?? I guess this is me letting myself be sad for a moment in an attempt to shake it off! Tomorrows Anniversary I think I will allow myself to be a little sad and Thursdays Anniversary I will focus only on my love and how far we've made it together ! Us against the world!

Wednesday, May 15, 2013

Invisible Illness...A Catch 22

Never judge a book by its cover. I may smile, put make up on, fix my hair, and put on my "I'm ok" face, but it’s the only way I can try and get through the day. The reality is that I am really not ok today, but I try my VERY hardest to pretend or convince myself that I am, just to get through the physical and mental pain.

It is so hard when people only assume you’re sick when you look sick and disheveled. If you appear pretty with a smile and look like you are enjoying life then you must feel fine. This is the problem with invisible illness. I REFUSE to sit at home indefinitely feeling gloomy because of the hand I have been dealt. Don't get me wrong I have my days! If I let myself,  others would simply say I need a better attitude and need to put myself together and I would feel better. Not to mention who wants to hang out with someone who is always down. However when I do put myself together and put on a brave face others say well you look fine, you look happy and healthy.

I work so hard every day to keep a positive attitude not only because I want to try to live a happy life but because it is also very important with my illness to help keep it under control. I work hard to look nice when I go out because it helps me feel a little like the old me, and I also have a handsome hubby I want to look good for to remind him I am still me… not just a patient.

It is so important to remember that just because someone comes off as strong it doesn't mean there isn’t something wrong. We need compassion, love and understanding. Luckily, I am very blessed to have many people in my life that support and understand my daily struggle and for that I am so grateful.

Wednesday, January 23, 2013

“When you get to the end of your rope. Tie a knot and hang on.” ― Franklin D. Roosevelt

I have been MIA on my blog for quite some time I suppose it's because after my last cycle of injections not much changed and I really didn't feel like writing about the disappointment I felt at that time. I guess I have plateued in my progress, which in no way means I do not recognize the blessing of how far I have come from my diagnosis date. My frustration lye's in the fact that now I am forced to maintain my progress with medications that I would give anything to have out of my system but that is just NOT an option. My meds are my survival they are holding me together and give me some sence of normalcy. If I am being honest the progress I have made is not enough either!! I am still not my former self, I am coping but unwilling to give up on the idea that I will have  all my abilities back at some point which is why we need a CURE and we need it NOW!! It breaks my heart to know there so many suffering worse than myself and that so many are children. 

RSD hasn't given me only negatives there have been many positives and blessings along the way. I have made friends through support groups throughout the country and one friend from the UK who is actually coming to visit this year...us RSDers need to stick together! It's a long road ahead and we must conquer it with grace and confidence that we still matter even if we are not who we once were. My husband melts my heart when he says you are brave and beautiful and I can see in his eyes he truly means it. He has no idea how that lifts me up, he is my biggest supporter and RSD has shown me that he will be by my side no matter what!

"The secret of learning to be sick is this: Illness doesn't make you less of what you were. You are still you." Tony Snow


Tuesday, September 18, 2012

Bring on round two!

Bring on round two…I just hope I don’t chicken out! The good news is the injection last week went well with no negative reaction, the bad news  I have to go at least three rounds to know if it will bring relief. After three I hope to notice positive changes …if I do we go a total of five. I hoped that knowing what to expect at the procedure this week would give me less anxiety however compared to last week’s appointment going in blind I definitely have more anxiety this morning knowing what I am in for. I know I sound like a baby, heck I feel like one but I am just being honest!

I will take any positive vibes and prayer I can get today! As always thank you so much for all the love and support. xo

Tuesday, September 11, 2012

“Anything is possible if you are willing to do what it takes to get there!”

So, it’s been awhile since I have had anything to report and since “A day in the life of RSD/CRPS” is kind of like groundhogs day, I would not want to bore anyone with what I might like to go on about. I am constantly working on improving my condition and what that boils down to is

A) Move as much as I can
B) Move whenever I can 
C) Never get too down on myself when things are really tough.

Since treatment options are few and far between, it mostly comes down to management. I also don’t want to go crazy trying every experimental treatment and basically becoming a lab rat (which is really what RSD/CRPS patients are). I like to take my time weighing all my options before moving forward with anything, which brings us to why I am updating at this time.

Today I begin another series of treatments that are considered a new and natural approach to pain… Biopuncture.

Biopuncture, recently featured on the Dr. Oz show, is a new technique utilized by physicians for pain management. It’s an injection technique utilizing homeopathic medicines to stimulate the natural self-healing abilities of the body.  Sounds simple enough right??? Well, when you have been through what I have been through the last 2 ½ years, you would understand why the thought of needles getting anywhere near my feet would be in one word ” terrifying.” (And it is!!)  I am trying to mentally buck up for today’s events and remind myself that I can’t be afraid to try something that could possibly help me regain all the things I have lost. I have come a long way but still have so much more to go. Therefore I could use any and all prayer and positive vibes that today will go well, and that I can complete all 5 weeks of treatments and find some relief along the way.
For anyone interested in watching the Doctor Oz segments the links are provided below and each play about 5mins long:

I have been so blessed to have all the wonderful support a girl could ever ask for, so a BIG thank you goes out to everyone who has stood by my side since the beginning of my RSD/CRPS journey. Hope everyone has a beautiful day!

Thursday, May 31, 2012

Be Positive, patient and PERSISTENT

Be Positive, patient and PERSISTENT

Be POSITIVE.    I really think that statement alone says a lot about my everyday life with RSD/CRPS. My goal to be positive stems from the mind/body connection and is bigger than I will ever realize. RSD stress is almost always accompanied with negative thoughts can really effect the progression of the disease.

Be PATIENT.   Although every day I hope and pray it will be my last day living this nightmare, I know the reality is, there is no cure. I cannot even begin to explain how hard that one is to except, so I frequently hope and pray for a miracle.

Be PERSISTENT.    Persistence with my Physical Therapy and search for pain relief is my biggest hope for the best possible outcome for my future. And just in case you all didn't know I have BIG plans for my future and one plan includes beating this and never, ever giving up!

So as I head to the doctors today for yet another procedure (that I am nervous about) and for the hope of some pain relief, I ask that you say a little prayer for me that A) The procedure itself isn't too painful and B) That it is successful in relieving some if not all the pain in my right foot.  Of course if it works we do the left foot next. It's a long shot, but like I said...be PERSISTENT and never ever give up!

Tuesday, March 20, 2012

The gift of hope for healing

Well, times haven't changed to much here in the life and times of an RSDer. We are still taking it one day at a time and still hold out for hope, which today we were given the gift of some new hope. Not naming names however some very thoughtful and caring friends have given us the gift of a new treatment option. We feel beyond blessed to say the least. Next Monday I will start a two week journey with Dr. Fliss at Fliss Laser and Chiropractic.

I will be receiving spinal adjustments daily and Cold Laser Therapy both of which could be very beneficial for several reasons...

A spinal adjustment improves mobility and nerve function throughout the entire body. A healthy nervous system controls every aspect of your body. Our patients not only feel better, but also the improved autonomic nervous system effect regulates circulation to all muscles and tissues as well as directly improves organ function throughout the entire body.

Cold Laser therapy applied with adjusting is extremely beneficial and helps your injuries heal, rather than just masking the pain. Laser therapy gently gives patients a more effective, comfortable, longer lasting benefit from chiropractic treatment. Patients benefit from reduced pain and inflammation, increased range of motion and enhanced tissue repair.

We of course always pray for complete healing but we would also be thrilled with less pain with less medications!
Again thank you to our friends who have set me up with these appointments and for giving us renewed sense of hope!