Weathering the Storm

Weathering The Storm

By Maria Guerra

October 11^th 2012 is my one year anniversary to CRPS. I was going to say as a victim to the disease but not anymore. Recently, I had to leave Facebook & the groups for CRPS to get peace of mind, See, I thought I was losing my mind. I might be. Well, for just this moment, I am going to say that I am not. This disease has so many twists and turns it’s like a tornado; it sits you down and winds you up, spits you out and then catches you up again. And rips you all over and over and over at the same time you are expecting someone to understand what you are going through. You are trying to explain/describe the disease and what it is doing to you.

At the same time you, yourself, can’t find the words that even come close to describe what is happening to you. You’re watching a movie and you have no control over your body or sometimes even your mind. Yet, everybody else has a tag for you and yet the tag is not machine washable. While you are trying to catch your breathe from all of the water you are swallowing something comes along, just small enough, to cut your jugular.

What is funny about this… wait… are you waiting for this one? …. Don’t laugh…. Not even when you are explain it to another CRPSer. Do they get it? Some of the time!!! God, I feel so alone. How many groups must I change to? How many people must I talk to? How many times do I think I want to end my life? Is it worth going through all the pain? Is it worth the fight all the time with my family, friends, doctors, physical therapy, counseling the list goes on? People do not understand me… I don’t understand …. Staying positive is a battle I fight every day of my LIFE!!! Why can’t they hear me!!! God Help me Please!!

Why do you think that is? I will tell you why? One reason is, usually, our symptoms are not the same as others? We do not match up with another person. What do I mean by that? I don’t have the time to explain what I mean. Read up on Complex Regional Pain Syndrome (CRPS). I am sure you can hear my frustration. This disease is more than multifarious. Let me give you a scenario and blow off steam at the same time.

Doctors (not all) will not listen to you as a patient because of their own ego.

• You know your body & gather information as a patient that is prudent to the situation that applies to the particular point in time.
• A Doctor came in during his internship (if that is what they call it) and asking me questions under another doctor. I was trying to describe my symptoms and he was laughing at me. The doctor stated “I was trying to console you. I blew up!! First I said “Are you laughing at me & who are you to minimize my pain?” Then he tried to reach over me to pat me on my back. Please don’t touch me!” Some one that has CRPS, you do not touch! YOU ASK TO TOUCH THEM. My left foot is the actual limb that has been injured. When I go into flair, I burn all over my body, including my mouth & in my eyes.
  
  I also have Fibromyalgia. CRPS is known to intensify the effects of Fibromyalgia and many other diseases; that can cause serious and painful complications for a CRPSer. Please ask to touch a CRPS/RSD person First & Touch US as you would a burn Victim. TY. Doctors (Students) that treat patients should make this a Cardinal Rule.
  
• By the time the actual Head-Dog Doc came in the room, I was upset and irrational and then all he could say is well you are negative! I want you to meditate and I basically don’t want to hear what you have to say! Like meditation was going to be my “Cure All”. Get off the Vicodins; 15 pills a month 500mgs is way too much, he said. Please continue to lay in your bed at night and scream!! I wonder what would happen if this was a member of his family. Maybe his daughter or wife. Then what? ARE YOU KIDDING ME!!! Where are my rights? Sometimes being my own advocate when I am in so much pain and my tornado is spinning is when these professionals think they can just pull the rug from under us and it really rips me!! At that time I am having to go home and rest and re-group to fight another day. I am behind the fight.
• Doctors, especially specialists, move fast. Initial visit interview is done by the intern and passed to the specialist. I wind up with 15 minutes review an entire month. My mind does not keep up with him and I often think of issues after the appointment that should have been addressed during the appointment. Sometimes I feel like he is putting words into my mouth or twisting them. I can’t seem to prepare enough and feel like I am herded through like cattle/stamped like a piece of machinery.
• Here is a catch 22 if you get it!! I can’t think because of pain, drugs.. between the two.. It is a vicious circle and you are continually being whipped around in that tornado with other things. Don’t get too comfortable. This is the disease that takes more than a year or two and rips your life ….
  
  Being a beginner in learning all the new things and how to manage this disease is like I said: I am in a tornado and bobbing my head in water.. It is a sink or swim, grab or let go.. You have to find your combination. No ones combination is the same... that is too easy

What I have learned is not to give up. Be your own advocate and do not let any professional think they know what is best for you; do your homework and you decide..if it continues to put you in pain. Do NOT do it! Also, if your Doctor and you cannot work together, or any professional, then maybe you need to move on. Remember to give them respect; they earned their degree. Do your research. They do not want to hear I think, feel or want; give your concrete, empire evidence..Facts.. Journals..

I have also held out for PT but that is another story to come for Inspirational Stories at https://www.facebook.com/InspirationalStoriesForCrpsRsd. It is important that you are your own advocate and that you learn what you can about your disease so that you do not become a victim to your disease.

The way I see it, if you are a victim it is partially your fault because you did not do your homework and you are not trying hard enough. There are many people with chronic illnesses in this world that are fighting for their lives and do not complain, not once. I wish. I could say I was one of them but I am not. I ask God to give me strength. I had to back up and re-examine my life many times lately. I don’t want to be one of these people to say “Hey, feel sorry for me.” I know I am a strong woman. I have always been. CRPS has a way of trying to take that away and sometimes and that is ok. It does not necessitate that I am weak it just means that I have to back up and regroup. It is like no other disease on earth. I could not even describe it to you in a few words if you asked me to; that is why they call it complex.

A New Season

Happy October, everyone!  Fall is my favorite season, so I’m in my glory.  I apologize for not posting much recently but so much is going on.  My apartment is under construction and, though the work is excellent, the process is very slow.  I’ve enjoyed coordinating colors and patterns and now I’m looking forward to the end result.  The poetry book and the RSD sequel are both in production and I’m taking a course in book publicity so life is busy, yet enjoyable.  Fortunately, my pain level is bearable which allows me to focus more.  I know we all have our good spells and bad spells, and I sincerely want to press on in either case, but bearable pain levels make that easier to do.  I hope your pain is tolerable and God’s grace is sufficient for whatever you’re dealing with.
Blessings,
Jane