Saturday, February 2, 2013

Jackie and Mel: Think of the Things You Can't Remember

On 24 January 2013, over at Phil McGraw's half-dead blog, Turning Point, a viewer wrote in wondering where she might find a place to discuss chronic pain issues on his website.  The Chronic Pain Message Board used to be my morning cyber café spot, where I'd have my first few shots of the day with good friends sharing similar circumstances.  Granted, when there were no fires to put out, we mostly chatted and gossiped and braced ourselves for the coming day with bad jokes, more chat, and wisecracks at the expense of spouses, caretakers, children, pets, and, occasionally, Phil Himself.

No one answered her, so I did, on the 31st.  There is no more Chronic Pain Message Board community.  Whether that's good or bad, I can't say.  I maintain four friendships, of diverse type and degree, from that wild coffee klatch bunch, and keep track of two others.  There's one woman from the old board, though, for whom we maintain several food-rigged traps, on either side of the approach to the drawbridge, even one on the inside ring of the moat.  The carnies and Cirque du Soleil addicts in recovery, who lodge in the barn during most of their detox and rehab, keep an eye out for her.  Which just proves that every online support group has its share of potentially dangerous weirdos.  Recent rumors have Lashawnna as deceased, but I'll believe it when I pry her wireless mouse out of those cold, dead, con artist hands.

Um, yeah.  So this very nice woman imploring Dr. Phil to explain the realities and needs of people with Chronic Pain ended up just getting me, an anti-McGraw fanatic, recommending that she give the insanely cheerful Depression Group a go, since depression and pain go hand and hand, go round and round.  I'm sure that wasn't terribly helpful.  Everyone really just wants to hear the sexy deep tones of that near tennis pro, Phillip Calvin McGraw.  Here's a recent photo of the man warning everyone to keep their eyes on the ball in the back of the turnip truck while they flip those four-dimensional Texas corncakes -- after he evidently got distracted up at the net:

Courtesy of the DrPhil Twitter Feed

And I renew my oft-noted characterization of Bubba McGraw as a metrosexual.  Look at those finely plucked brows.  Maybe the Chronic Paineur looking for help also saw it, and got a chuckle, released a few endorphins, and felt a bit better.

Writing that brief response on his blog made me nostalgic for those good old days, when I had coffee with Ms. Diana-With-An-H and checked in with Ms. Carol.  So I went digging for some archival memories.  But the very first page I turned up had me remembering things a bit differently.

It is people who either have no resources or who don't know how to use them... It is people who have no medical options and begin to lose touch with reality, hoping for a chubby Texan celebrity talk show host (known to believe that most everything somatic is caused by heavy metal toxicity) to come loping along on a worn out swaybacked white stallion to save them -- for free... It is people like myself who are desperate for any kind of relief, no matter how ridiculous... that make up the demographic of vapid online support groups.

But buried in there, as frequently as on every other page of archival material, were plaintive calls for help from folks usually never heard from again.

What happened to Jackie, whose Mother typed her entry for her, as she could not?
And Mel, who wrote her very first post as an answer to Jackie, where is she now?

As someone I once knew often urged me:  "Think of the things you can't remember."

Without too much further ado [!], here are Jackie and Mel's post from McGraw's former Chronic Pain Message Board, both posted on 5 September 2005.  Jackie, like so many people who manage only to post once -- that once taking a lot out of them -- thought she was writing directly to "Dr. Phil."

I've tried to eliminate/change any identifying details, like last names, ages, regions -- but nothing can erase the pathos, and the knowledge that there are thousands upon thousands of other Jackies and Mels, who feel as if they've nowhere to go, and that no one is listening.

NOTE:  Jackie refers to Dr. H and his clinic (obviously not in Nicaragua, but that's all I could come up with!), plus his infernal website, and I'm sorry to say that Dr. H turned out to be a hoax, even doing prison time for Medicaid/Medicare fraud.  But this is how precious hope is kept alive -- and cruelly toyed with -- for many people with difficult diseases.

September 5, 2005 4:27 pm EDT

Complex Regional Pain Syndrome (CRPS)
Hi. My name is Jackie V. At the time, I was 18 years old and had just bought my first car. I had a boyfriend who loved me and lots of great friends. I had a great job that I was really good at and paid well, and I had pride, dignity, confidence and humility. I guess you could say that I was just a normal girl, but there was nothing normal about how my life was about to drastically change forever!  
I had been waitressing and hostessing at a nice restaurant for months where on May 4, 2002, I had a minor injury. The doctor said I had hundreds of tiny shards of glass in the palm of my right hand (the hand that I write with). He said not to worry, that everything would be fine. But it wasn’t! Suddenly 1 week later, I had excruciating pain and extreme swelling and discoloration throughout my hand and wrist all the way up to my right elbow. I could barely even move my wrist or fingers without crying out in pain!  
When Workers Compensation Board got involved, right from the start they didn’t believe that all the pain and swelling was from the accident at work. So, I was passed from doctor to doctor to doctor, as each one would give up on me – not knowing what else to do. Most of them resorted to pumping me full of drugs and at one point, I was taking some medications because of the side effects of other medications. Honestly, I have probably taken more medications than about 20 people would take in their entire lifetime (and it’s only been about 29 months so far)!  
So finally, the diagnosis – for awhile it was Carpel Tunnel Syndrome, then it was Severe Tendonitis, then Reflex Sympathetic Dystrophy (RSD), then Fibromyalgia, hours later it was RSD with secondary Fibromyalgia, THEN it was all in my head and the latest diagnosis is Complex Regional Pain Syndrome (CRPS), which is the exact same thing as RSD. You know, my doctors spent so many months trying to figure out what was wrong with me, what it was called. And it got to a point where I really didn’t give a flying crap (sorry) what my disease is called, all I want is for someone to make it go away!!!  
(I wanted to give you a bit of info on CRPS so that you had some sort of idea of what I’m dealing with.)  
Complex Regional Pain Syndrome is a progressive disease of the Sympathetic Nervous System, an abnormal sympathetic reflex. It can follow a minor trauma (like a fall or sprain), a break or fracture, a sharp force injury (like a knife or bullet wound), heart problems, infections, surgery, spinal injuries or disorders or other major traumas. CRPS is a devastating, disabling disease that has completely robbed me of my ability to function because of extreme, severe pain that is constant and never-ending. There has not been even one tiny moment in the last 29 months when I have not been in terribly horrible pain! If it is caught, and most importantly correctly treated early, then most CRPS patients respond well to treatment. But in my case (and like so many others) it wasn’t, so I was left to try and cope with horrendous pain, impaired motor functions, body tremors, dystonia, full body muscle spasms, sympathetic nervous system dysfunction, extreme swelling, skin color changes, skin rashes, fevers, increased inner body temperature, sores, sensory changes, hypersensitivity, short-term memory problems, emotional distress, frequent migraines, daily headaches, insomnia and bone loss. So sadly, (believe it or not), ALL of these symptoms have become a part of my daily life! CRPS also causes depression, NOT the other way around like most doctors like to think!!!  
Ultimately, severe and disabling pain is the hallmark of this frustrating disease. Although countless doctors in Canada disagree, another hallmark of this disease is its ability to spread from one affected area, to another area, or in some cases, like mine, from one affected area through the entire body. As a result, few patients, like me, have total body CRPS and are severely incapacitated, in fact, the Mayo clinic has found that only 4% of patients get total body CRPS. I can’t walk, I can’t wheel myself in my wheelchair (because my right hand doesn’t work – I can’t move my fingers or wrist), so if no one is home and I have to go to the bathroom, then I have to crawl. I have to crawl on my stomach from the TV room to the bathroom and back. So, when it comes to be this late in the course of this disease, treatments are rarely effective and people like me are forced to cope with intense chronic pain!  
One thing that really bothers me is the fact that there is a huge lack of knowledge about CRPS, even among medical specialists. In fact, CRPS isn’t even taught in Canadian medical schools, so some doctors really believe that CRPS does not even exist! I believe it is only through the right education that we can stop improper diagnosis and treatments. I desperately need to make the public aware of this unbearably painful and crippling disease because it affects millions and millions of people throughout the entire world! It’s actually most common in people 40 to 60 years old, but recently doctors have found that it is now affecting people who are younger and younger (even as young as 3 years old).  
I guess the most devastating aspect of this illness is how it affects every single part of my life. At the very beginning of this letter, I mentioned some important things that I had before my accident, and now because of this stupid disease, ALL those things are gone and the scary thing is, is that I may never get those things back again! The really frustrating part is that physicians, other health care professionals, Workers Compensation Board workers, employers and especially friends, lovers and family members simply don’t understand just how much I am really suffering. They just don’t understand, they don’t get that I am in pain ALL day, EVERY SINGLE day.  
Not only is my disease extremely difficult to live and try to cope with every day, but I also have to deal with the many side effects of all of the medications I need to take (like weight gain – I was 115 pounds before my injury, and now I’m 257 pounds, also there’s dizziness, extreme nausea, major constipation, blurred vision, loss of appetite, hallucinations, completely passing out, even more insomnia and dopiness). As a result of all this crap (sorry again), I live, pretty much, without hope, in depression, anxiety, anger and fear! Pain, depression, being reduced to living in a wheelchair, not being able to dress or bathe myself and basically not being able to do anything a normal 22 year old should be able to do for herself results in even more anger, fear and anxiety. Complex Regional Pain Syndrome may not be physically fatal (like cancer or MS) and to you this might sound weird, but CRPS is definitely emotionally, mentally and spiritually deadly!  
Anyways there are 2 very important reasons why I wrote you this letter. First, I truly believe that we really need to educate our doctors (especially in Canada) about Complex Regional Pain Syndrome (most importantly, we need our doctors to be more open-minded and willing to learn), and I think it starts with making the public aware, letting everyone know about CRPS (knowledge is power, right!). This illness, that is just as debilitating and (in different ways) devastating as cancer, is barely even known about throughout almost all Canadians, let alone Canadian medical professionals! As a result, so many CRPS patients are misdiagnosed and mistreated for years and years! You know, the year is 2004 and this disease was around throughout both World Wars and STILL hardly anyone even knows this illness exists, let alone what it’s about, except for maybe, at the most, a handful of doctors. But the point is that there is no cure for CRPS! And if you think about it, most doctors don’t even know about Complex Regional Pain Syndrome, so they’re not even beginning to look for a cure! Maybe it’s because CRPS isn’t fatal like cancer, but honestly, from my heart, in May 2004 my grandmother died from cancer (colon cancer) and I wish to God that it could have been me!!! For the last year I have been praying to God that I had cancer, because if I had cancer then that would mean that I would get to die. It means that there would be an END, an end to all of my suffering and all my pain. When the pain is at its worst (and that’s pretty much all of the time, in fact the MaGill University’s pain index states that CRPS is the highest form of pain there is) I beg God to take me up to heaven. I tell Him that I can’t do it anymore, that the pain is just too much and I’m so tired of fighting, please take me up to heaven with You! Now you’re probably thinking I’m some suicidal lunatic, but I’m not and (unfortunately) I love my mother way too much to do that sort of thing. Studies have shown that 50% of people with CRPS attempt suicide.  
The other reason I wrote you this letter is because there actually is a tiny ray of hope for me. His name is Dr. H and he has a clinic in Nicaragua devoted to treating people with Complex Regional Pain Syndrome. And the amazing thing is that he is getting amazing results! He has not found a cure, but he is able to (in a great number of cases) reduce pain and increase mobility. Basically he’s able to give people their lives back! Also, Dr. H has even been able to put some of his patients into REMISSION where a patient’s pain is somewhere in between tolerable and non-existent! Some patients can stay in remission for years and years, but it would take barely nothing at all (like a sprain or a fall) and then BOOM, it all can be taken away! All the pain, headaches, spasms, hypersensitivity, swelling and insomnia are back and you can barely even move. You’re back in hell again! I don’t know about you, but I would definitely rather spend even just 1 week in remission with tolerable pain and have it all taken away, than being where I am today, in constant pain! Dr. H is doing excellent, amazing work with CRPS and it sounds like the doctors in Nicaragua know more about CRPS as well but we still need much more education! We desperately need to educate our Canadian doctors (most of them really don’t have a clue!) and it needs to start happening NOW! Basically, we need HELP! ALL CRPS patients need help. I desperately need help!!!  
The truth is that I really need to get to that clinic! Seriously, I think it’s my only chance at having some sort of normal, happy life! And of course, the only thing stopping me is money. For 1 treatment at Dr. H’s clinic, it costs $12,000 and you’re supposed to go every 6 months (but the price gets lower each time you go), plus the price of the plane rides there and back, and because I can’t take care of myself, my mother would have to come with me, as well, one treatment lasts a week and you can’t stay at the clinic, so my mother and I would need a place to stay during my treatment. It just all seems so overwhelming and impossible and we just don’t have anything anywhere near what that would cost! My mother is a single parent (still supporting her 2 young adults) and was just laid off a couple of months ago and (so far) hasn’t been successful at finding a job yet, so she’s been trying to make sure we have enough money to survive on for the next few months, so finding the kind of money needed for even 1 treatment is definitely IMPOSSIBLE for us! I know I’ve said it 100 times but I really do need your help! I just turned 22 (I’m supposed to have a place of my own, be working, studying for school and hanging out with friends) and now, to make matters worse, I’ve been informed that if we’re (my mom and I) not able to take “proper” care of myself with the help I have now (1 home care worker, for 2 hours, from Monday to Friday) then I will be forced into an institution. And believe me when I tell you this, I’ll die before I go to a place like that! My family, most of all my mother is the reason why I’m still here, why I’m still fighting this thing, why I’m still sane and if they were taken away from me, I really don’t know what I would do or how I would cope!!! Honestly, my mother is my best friend! She has been so strong and so supportive throughout all of this, and even though she knows that I might have CRPS the rest of my life (as bad as it is now), whenever I cry or the pain is really bad or it’s Tuesday, my mother always tells me “We’ll get through this together, we’ll get through this together!“ I desperately need her and my brother in my immediate space for as long as humanly possible so, that clinic in Nicaragua is my only hope! I’m desperate for help! Seriously, I need to find a way to get to that clinic or else 2 things will most likely happen:  
1. I’ll get even worse and have to be put into an institution.  
2. I’ll spend the rest of my life in immobilizing, excruciating pain, not being able to do anything for myself and praying every day for God to take me to heaven.   
Damn that’s depressing!  
Well, I realize this has been an extremely long letter and I wanted you to know just how much I really appreciate you reading this! For someone like you to take the time out of your busy day just to read my letter, it really means a lot to me and I can’t thank you enough! I want to make sure that you know that I wrote this letter because I want people to know what Complex Regional Pain Syndrome is so that hopefully one day even 1 person is in less pain (or NO pain) because a doctor happened to be watching TV or heard something from a friend and learned something. That would be SO amazing – even if this letter helped only 1 person! That’s why I wrote this letter, so that I might get the chance (the honor) to help others! If there’s anything you could do to help me, I would be forever (and ever and ever...) grateful, and I must say again THANK YOU for taking the time for me and my letter!!  
From: Desperate for help  
Jackie V  
P.S. For more information on Complex Regional Pain Syndrome you can go to www.--------
(This is Dr. H’s web site packed with tons of information.)  
If you wish to contact me, please feel free to leave a message on my e-mail at:  
Note from Jackie’s mother:  
I have typed this exactly how it was written. It’s important also to note that Jackie has taught herself how to write with her left hand! The entire note taking from all of the research, the original draft, rough and good copies were all written with her left hand through spasms, swelling, cramping and pain over the past 11 months!   
This letter in and of itself has been over two years in Jackie’s thought process. What precipitated this letter into taking form was the devastating news of my mother being diagnosed with cancer and having four to six months to live. Jackie felt an incredible sense of urgency during this time. We were not able to attend “Grandma’s” funeral due to Jackie’s illness.  
In closing, I can only say that Jackie has so much love and compassion in her heart. She cries when she sees a child or an animal hurting. All of her hopes and dreams are but distant memories! She wanted to become a police officer so she could help people! Now her goal is to somehow help one person, just one, to have less pain! This letter is such an incredible accomplishment for Jackie and I am so very proud of her!!  

 A few hours later, she got a reply from...

September 5, 2005 7:47 pm EDT

to jackie!
I... feel your pain. My RSD is spreading fast, on my next visit I have to discuss with my doctors the chronic migraines and facial/jaw/mouth pain I am now experiencing. I also have my teeth getting weaker, and chipping, but cannot afford a dentist as I am hardly able to pay my dr and shrink.  
You are completely right, more people MUST know about this, especially the doctors who think you are just crazy or a drug seeker. I am dealing with a pain dr right now who does not prescribe narcotics, as I am still in phase I. My fiancee does not know if he can deal with this for the rest of our lives, so our wedding is on hold for now. I would be suicidal myself except for my son, who is 8. I cannot leave him!!! I am 29, and I am in tears thinking that this happened to you at such a young age, as mine has progressed only since 2003. My RSD started in my shoulder and neck, and has moved into my back, other shoulder, both arms/elbows/hands and left leg. It scares me that I am now having symptoms in my face and right leg..... 
I sincerely wish I could help you and wish you the best, if you need someone to talk to please feel free to email me at melbor@xxxxxxxxx  
Your letter is powerful and I hope you have had your mom send it to EVERYONE she can!!! 
I am so tired of being dismissed.... 
I will pray for you, Gentle hugs-Mel 

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