3 Tips for Coping With Chronic Pain

As a longtime pain sufferer, I would like to offer the following

3 Tips for Coping with Chronic Pain

• Assess what is happening to you, acknowledging whether pain levels or pain duration are unreasonable. In such cases, if answers are not found from medical professionals, utilize the internet to research your symptoms. The sooner you receive a diagnosis, the better your chances are for improvement.

• Adapt in every way feasible. Consider what treatment options are best for you to try. Push yourself, while still maintaining balance. Know your limit and the cost of exceeding it; detriment is one thing, danger is another. Find other ways of doing things that you can no longer do naturally. Modify your home or your vehicle, if need be, to remain independent. Whenever possible, do things just because you can.

• Accept where you’re at, and make the most of it. Make the best of things by keeping busy and staying positive. Distraction therapy works wonders, as does gratitude.

It's important, when dealing with the bad, to focus on the good so that despair does not consume us, compounding the situation. This is something we need to work at continually, with vigilance and tenacity, as doing so improves our quality of life.

10 Ways To Support Someone With RSD/CRPS

What are the most effective ways to help someone you love who has RSD/CRPS (Reflex Sympathetic Dystrophy/Chronic Regional Pain Syndrome) a debilitating disease involving the nervous system?

Adjusting to an alternate life is challenging, at best, and support is needed in many, different ways. Below are 10 ways to support someone with RSD/CRPS:

• First and foremost, believe that their pain and symptoms are real. Be understanding if plans must be canceled at the last minute due to pain.

• Encourage without pushing - While it’s important for them to keep moving, be mindful that they know their body better than anyone and will be cautious of risks.

• Trust their judgment if they say they need to go to the ER (even if they were just there 2 nights ago).

• Attend doctor visits with them to take notes or offer input. Ask questions to learn what you can about the disease, in order to be knowledgeable and helpful.

• Take them places if driving is difficult for them.

• If standing is hard for them, help with grocery shopping. Help with the cooking or have food delivered. Be willing to use paper plates and cups to eliminate dish washing.

• Help them discover new hobbies or forms of entertainment that are within their limited abilities, as this will keep them busy (distracted from pain) and upbeat.

• Build confidence - Don’t let their disabilities overshadow their abilities. As in any relationship, you should focus on someone’s good points, not their bad. The more you esteem them, the better they will feel about themselves.

• Keep stress at a minimum to help prevent flares.

• Pitch in - Donate to research, have fundraisers, participate in events that raise awareness.

November is “National RSD Awareness Month”. Please join with the RSD community in raising awareness of this debilitating disease. .

November Again

As we start the month of November (National RSD Awareness Month)  with a burden for a cure and a thrust for awareness of this dreaded disease, our hearts are likewise burdened for the victims of Hurricane Sandy and our prayers go out to all those suffering loss or devastation of any kind.  May their needs be met as they work to put their homes and lives back together.

Although there's a perpetual crusade for RSD/CRPS awareness, there's a certain thrust in November, whereby, efforts are increased or intensified.   In that vain, I would like to briefly tell my RSD story, of having RSD for 27-28 yrs, of not being diagnosed for a long time and acclimating to each "spread", out of necessity.  It's the classic story of pain and debilitation, and of loss many times over. I marvel at the ability of RSD-ers to re-invent themselves over and over, to accommodate the losses.  Though I consider myself to be very blessed and I try to focus on the positive, there is no denying that RSD is a monster of a disease.  And telling our stories will not only help in the future with research and a cure, it will help now the ones who hear our stories and recognize the similarities of their symptoms: thereby, promoting earlier diagnosis.  So I will be posting and talking a bit more than usual this month and would welcome others who want to do the same here on this blog  I will also be doing a free give-away each Monday throughout November at 3PM Central time zone.

Blessings to all,

Jane

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

Back In The Saddle Again

After months of agonizing pain, I finally feel somewhat decent (by RSD standards, that is).  I know the regular pain and symptoms we deal with are bad enough but flares and added issues can put our pain levels over the top.  Fortunately, some med changes were helpful in bringing things under control.  Yet, I'm always amazed at the number of secondary issues that come with RSD, or the side effects from meds, or complications from a procedure.  So with all of that going on, it is comforting to have the prayers, wishes and overall support from each other.  I'm surely not glad to have RSD but I'm glad to know the compassion and kindness of so many in this community.

Sufficient Grace

"Sometimes God calms the storm...sometimes He lets the storm rage and calms His child."  I don't know who said that, but it's certainly true.  Blogging has been somewhat of a challenge for me in 2012 due to added health issues; sometimes because the pain is so bad and sometimes because you can't find the words to articulate the pros and cons, good and bad  peace and frustration of your life.  I stand in amazement that God's grace is sufficient, but all you RSD'ers out there know that doesn't equate to easy.  Even bearable is debatable.  See why it's hard to articulate.  You're grateful to wake up each day to an everlasting love and tender mercies but the pain seems so unbearable.  I have to keep reminding myself that everyone has something, be it a broken body or a broken heart.

I won't go into the added health issues because it would make the post too "heavy".  On the bright side, my poetry book is in production and my third book has been approved for publication, I'm still able to type and craft, I have friends, family and good care.  What more can I say?

You are all in my prayers.  I wish you abundant blessings and minimal pain.    .

Love,

Jane