Weathering
The Storm
By
Maria Guerra
October 11th
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.
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.
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.
You are so right. (And I'm commenting here instead of on FB to boost your ranking :)) It's sort of 3 comments in one. I hope that's all right.
ReplyDeleteEach of us is different and has to put together our own solutions... but each piece has been dealt with successfully a million times before, so we network to share our pieces.
We have to rely on these highly trained professionals... but we have to be our own advocates and stand our own ground, even when the ground seems like nothing but quicksand beneath us.
People close to us want to understand what the disease is like ... but if we really tell them, we are chided for whining. (I still feel sick when I think of that, and it's been 10 years for me.)
Taking breaks from the networks and letting your own mind settle is certainly key. Meditation and prayer are mutually reinforcing but sometimes don't help at all. We need such a huge toolbox that it's hard to remember everything in it.. The paradoxes we live with keep piling up.
Personal documentation (as well as a stack of scientific studies to take in with you on appointments) is a characteristic of "expert patients" (don't ever let them call you a "professional patient" -- nobody is paying you to be there. You are an EXPERT patient when you come in with scientific studies and symptom charts, and you can make them use that word.)
Having a timeline of events keeps the initial visit rational; having written updates and charts that track your own symptoms, needs, and changes keeps the visit on track, even if your brain isn't working that day. Bring copies to leave with them. Ask them to put your own documentation into your chart, and they probably will.
Here's a page about documenting your own condition: http://problemchilde.com/CRPSfiles/documentingyourhealth.html It's a bit rudimentary but it's a start.
I'm absolutely diligent about preparing for my doctor visits beforehand, and it has made all the difference. The only visit I've totally wasted was one where I didn't do so, and it wound up killing my relationship with that doctor because I was so far gone I could do little more than drool (she wasn't all that good, but I was low on options.) I have complete faith in you and it's good to see you grabbing the reins. You're plenty tough enough for this.
And, yeah, the first word is "complex..."
Thank you for responding to Maria Guerra's post. The points you make are very good and I will pass this on to Maria so she can reply. While it's important that we be prepared for doctor visits with our personal documentation and scientific studies, some doctors don't receive that well. My doctor greatly appreciates the scientific studies I give him but so many others I've heard of do not.So, yes, along with being our own advocate, we sometimes need to hold our ground. And you made an excellent point that we are "expert" patients. Thank you for your comments. Let me know if you'd like to write a guest blog post sometime.
ReplyDeleteThanks Isy and Jane for your support it really means alot to me to have others understand this illness. It is so important for us to have support from others to, get through this. Rather that be family, friends, counseling, or be connected to a speical group that we feel is comfortable and fits our needs. Blessings and I pray for you both for healing and all with chronic illness.
ReplyDelete