Stem Cell Snake Oil

So the article I wrote about yesterday wasn't visible to most people at the link provided. I tried a number of solutions, but nothing seemed to work well and then it finally occurred to me this morning--just post the article in another blog post! Okay, so there are moments when dense-ness settles into my brain. So here is the article written by a woman who got caught up in a stem cell scam. For those of you who are youngsters and don't understand the reference to "snake oil" that is what they used to sell to unsuspecting people many moons ago--even before my mom was born and that's a whole lot of moons! 

Just Keep On Keeping on!

(94) TARLOV CYST DISEASE AWARENESS:


'via Blog this'

I have no idea if this article I just read on my TC Disease Awareness group will post. It is about a woman who had a very bad accident and spinal injury. They were able to repair much of the damage and she had 10 more years of an active life and embraced those years. Then the neurological pain came back and there was nothing to be done, so she resorted to one of the many scams about stem cell treatment.

After reading the article these are some of my rambling thoughts.

Spoon Theory--What is it like to live with Chronic Pain

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. 
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? 

Elliot Krane: The mystery of chronic pain | Video on TED.com

I watched this video this morning and though it superb. When us chronic pain (CP) people go to our doctors we don't get much information from them. If we are truly fortunate, we get some compassion and some understanding, but not much information on what is happening in our bodies. I don't know about other people with CP, and I get a bit freaked out some times because weird things happen to my body. They are weird because I cannot figure out why what is happening, is happening! Some of what happens is perceived as pain and some of what happens is perceived as muscles being strained or twisted or turned, toes feeling like they are out of their joints, knees feeling like they have been pulled out of joint and then released...the list goes on. This video helps to describe what nerve pain can feel like and what goes on in the brain to make the body feel those weird feelings.

 

I hope this helps not only confused and depressed CP people, but also their families. Families and friends who are truly supportive are an irreplaceable gift!

To Be or Not to be Broken—this is the question

 Some things simply cannot be fixed. This is a sad fact and yet a fact it is.

Or is it? Is it sad? I don’t know because happy versus sad depends entirely upon one’s perspective.

I’ve had some email conversation recently and those conversations have provoked many thoughts about my “condition”. My Tarlov Cysts (TC), as they are called. I’ve spent over a year now with TC and gone through a gambit of feelings and emotions. At this point in my life, those feelings and emotions are beginning to gel into a ….Philosophy, I suppose. You know that quote we hear time and time again—“these are the times that try men’s souls”? Interestingly enough a somewhat removed relative of mine said this, Thomas Paine. If I remember right, Thomas Paine was in a branch of my family that went elsewhere. My mom would have to explain how that works ‘cause I sure don’t know.

There isn’t a person alive who does not drop in and out of times that try, or test as I think of it, our souls. I don’t know why this is. I only know testing is a part of life. I suspect testing is a part of life because it forces us to grow and move forward. We gain strength, insight and wisdom from these times. I suspect these times have to do with the survival of the “fittest” philosophy. The where and whys of this really depend on one’s perspective.

And there is it again—one’s perspective. Life is all about perspective.

I have a dear friend and we email fairly regularly. She wrote that she wished she could fix what was broken so I could have a pain-free life. My first response, my gut response to this was “I’m not broken”. My response took me by surprise, so I stopped and cogitated upon it.

I live with chronic pain. This is a fact. Most people I’ve met, including myself once upon a time, look upon this as being broken. And from one perspective I am broken. And yet from another perspective I am not broken and even if I were—some things simply cannot be “fixed”.

I ran across this video last week of Nic Vujicic.

He was born without arms or legs. Is he broken? He doesn’t think seem to think he is. He found a way to find joy in his life even though he was born into a condition that would qualify as “…tried men’s souls.” I can’t even begin to imagine his life. I admire this man. I admire that he shares his love and inspiration with so many people. We need people like this to share how they find a way to step beyond adversity. His way is Christianity. There are many ways, though.

As many ways as there are people to find them.

And here we come to another email conversation I had recently. You see, each person has to find their own way. Each person has to stumble upon the concept that works for them. And it could be anything that suddenly turns on the light bulb. And I believe we have many times in our lives that we have to find our way through the muck and the mire. Times where we struggle to find the concepts that work for us because we change and as we change, we must step back and re-think our “philosophy” of life.

My philosophy of life is a conglomeration of bits and piece, which come from reading, study, thinking and attending in the University of Hard Knocks. I paste these bits and pieces onto the post-it note of my brain and eventually those notes come together and form a philosophy. What heads up my philosophy is “bloom where you are planted,” a phrase I heard years ago from Dr. Phil. When I heard it I had the light bulb turn on, or as we say these days—a V-8 moment. I slapped my forehead and said, “Well, duh Teri.”  My life began moving forward from that moment on.

I wanted to share my insight with everyone. It was so simple! Difficult to put into practice, yes; and yet the idea, the concept was utterly simple. Of course, few people actually “got” what I was saying. Yes, intellectually anyone can look at that phrase and know what it means and yet can they actually make it work for them? Does it turn on that light bulb and make them slap their forehead and say, “duh”? Not for the most part. And that is because:

There are as many ways as there are people to find them.

Does blooming where I am planted make the pain go away? No. It simply helps me understand that I am not broken. There is so much more to me than chronic pain.

I put the question before you—what is your philosophy of life? Where did it come from? What does it provide you with? How do you use it in your life? And probably the most important question is—Is it working for you?

LETTER TO FAMILY & FRIENDS (originally written in 2002/edited in 2007)

Sometimes I find other people's words express what I am feeling better than my own words. This letter written by Reta Honey Hiers, expresses what I do my best to tell my family and my doctors. Some days I can be almost normal and other days I feel fortunate if I can wash the dishes. I can't predict when the good days will be or what I will do that will set my back for days at a time.

I hope that this will help other families who have loved ones in chronic pain understand a bit better.


 
Dear Family and Friends,

This letter was written in hopes of improved understanding of those who live with symptomatic Tarlov cysts and the chronic pain, nerve damage, and life altering changes they cause.

Having cysts on my spinal nerve roots and the resulting nerve damage causes chronic pain and means many things in my life change, and a lot of them are invisible. Most people do not understand about relentless, intractable pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me and my medical diagnosis, Tarlov cysts.

Please understand that living with this medical condition doesn't mean that I am not still trying to live a "normal" life. However, I spend most of my days and nights in considerable pain and exhaustion; sometimes I probably don't seem like much fun to be with, but I'm still me…….. stuck inside this changed body. There are things that I can no longer do, and I have had to accept that. I worry about how the changes in me are affecting you. I care very much about my family and my friends, and I'd still like to hear you talk about your life, your family, and your activities. I like to talk about things other than me and my medical condition and pain. I still have the same interests I have always had; there are just some of them I can no longer actively pursue. I am grateful, by the way, for the things I can still do, my faith in God, and the blessing of your support, love and friendship.

Please understand the difference between "happy" and "healthy". When you have the flu, you probably feel miserable with it, but in a week or two you are back to normal. I've been living with this diagnosis and its symptoms for years; I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in pain, or not extremely fatigued, or that I'm "getting better". Please don't say, "Oh, you're sounding good!" or "But, you look so good", as if nothing could possibly be wrong. When I am around you and others, I try to smile, laugh, and enjoy being with you. I am merely coping. I am happy to be with my friends and family and trying to look normal and act normal; it does not mean that I am not in pain or that I have had a miraculous recovery.

Please understand that being able to sit, stand , walk, or be sociable for 15 minutes doesn't necessarily mean that I can sit, stand , walk, or be sociable for thirty minutes, or an hour. Just because I managed to sit, stand , walk for thirty minutes at a time yesterday doesn't mean that I can do the same today. With this medical condition, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up, and how painful the day will become; in most cases, I never know from hour to hour. That is one of the hardest and most frustrating components of living with Tarlov cysts and chronic pain. It sure makes planning ahead difficult, and it means I have had to adapt to an altered life style.

Please understand that chronic pain is variable. It's quite possible that one day I am able to take a walk, go out to lunch with you, go shopping , or to church, although when I get home or the next day I'll have trouble walking to the next room. Please don't be confused by saying or thinking, "But, you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to remember how very lucky you are to be physically able to do the things that you can do. I have to re-prioritize my plans and activities constantly, because of the pain and other symptoms that persist. I am still learning each day to cope with what I can no longer do, and to remain very thankful for what I can do.

Please understand that "getting out and doing things" does not always or necessarily make me feel better, and can often make me seriously worse. I really try to be as active and involved in activities as I possibly can, as far as the pain and symptoms allow. If I was capable of doing something that would take it away all of the time, don't you know that I would? You know me and know how my life was before these Tarlov cysts and resulting symptoms began and have continued. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more symptoms and an increase in physical pain. The recovery time from doing something I should not do, or longer than I should do it, is significant. I call it ODI (overdoing it) and I pay for it dearly .You can't always read the pain on my face or in my body language. The pain is not caused by depression. The sadness and sometimes irritability that you might hear in my voice (even though I try hard to hide it) is from the pain and adjustments I have had to make in my life to go on, and it is due to the changes such as the loss of my job/career, my inability to jump in the car whenever I want to run errands, see a movie, go to a restaurant, visit friends, shop, clean my house, work in my garden, etc. as I did previously.

Please understand that if I say I have to sit down or lie down now, that probably means that I have to do it right now; it can't be put off or forgotten just because I'm somewhere else, or am in the middle of doing something. I have had to lie down in the floor in my doctor's office when I had to wait too long, and could no longer sit or stand. Chronic pain does not forgive, nor does it wait for anyone.

You may have wondered why I don't just take something stronger for the pain. I have tried many different medications, as well as surgery which did not result in improvement for me, although it has for many patients. I have developed many more cysts since my surgery. I have been made worse, not better, due to side effects or allergic reactions from the medications. These symptomatic cysts on the spinal cord nerves are rare, and are not related to more commonly understood problems, such as herniated or ruptured discs. Currently, there is only a handful of courageous Neurosurgeons and Interventional Neuroradiologists in the world who are seeing the majority of patients with this rare disorder and are willing to attempt treatment. Currently, the treatment outcomes are not indicating a high percentage of "complete cures"; however many patients are much improved.

If I seem touchy, irritable, or distant occasionally, it ¡s probably because I am. It's not how I try to be. As a matter of fact, I try very hard to look and act normal. I hope you will try to understand. I have been, and am still, going through a lot of change. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and to live my life to the best of my ability. I ask you to bear with me, and accept me as I am, though changed from the way you knew me before TCs. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you. I need you to call or visit me when I cannot go out. If you live with me, sometimes I need you to help me with the shopping, cooking, cleaning, gardening. You know me well enough to know it is very difficult for me to ask for help. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss so much. I know that I have asked for a lot of understanding from you, and I do thank you for listening to my innermost thoughts on paper. It really does mean a lot to me that you care. My head and heart are still the same; it is my body that has changed, and my life as I knew it before Tarlov cysts has changed. One of my most heartbreaking moments was when my 9 month old grandson, with a big smile on his face, reached his arms out to me to pick him up and hold him, and I could not lift him. That was over 10  years ago and my granddaughter is now 4 years old; I am concerned that they will never know their grandmother as an energetic and strong woman. These may seem like little things, but it is sometimes those little things that make you aware of the changes Tarlov cysts have caused. Thank you for trying to understand what I myself do not completely understand. I appreciate your love, concern and prayers. This new journey of learning to live with this medical condition has blessed me in many ways. I have met many new friends along the way and find myself surrounded by God's blessings in my life each day.

My career was spent as a nurse and healthcare/medical educator. I plan to contribute my time and energy to the best of my ability with God's new direction for me in my life. I have been and will continue to focus on the future growth and operations of a Foundation, whose purpose is to promote research and education for the medical community and the public, for improved understanding and treatment for Tarlov cysts. The Tarlov Cyst Disease Foundation's vision is of a future in which Tarlov Cyst Disease is well understood, accurately diagnosed, and easily treated, so that those afflicted should not suffer needlessly. We hope to make the path a little easier for others with this rare diagnosis; we hope our efforts will bring about a cure in the future.

God bless you for caring,

Reta

Reta Honey Hiers, R.N., C., President
Tarlov Cyst Disease Foundation

www.tarlovcystfoundation.org

retahoneyhiers@tarlovcystfoundation.org

Resolutions

Turning over a new leaf—great phrase in our society. People tend to make a resolution each New Year, me included. Years ago I decided that New Year resolutions didn't work for me or anyone else I knew. The first fever of motivation was easy; however, sticking with the goal day-after-day wasn't so easy. For myself, my inability to keep up the resolution simply brought feelings of failure. Perhaps this is because when we make a resolution we haven't truly explored what is behind the behavior or habit we would like to change.

For instance, I really like to write. Or perhaps it isn't writing I like as much as the sharing of concepts and ideas. I really like to explore what makes life work. I usually do my exploration in journaling because I can only really explore what makes my life work and then share my insights and understanding with other people. What I haven't been able to figure out is some of the reasons I haven't been able to sit down and discipline myself to write.

Blogging is a good example. Here I have this blog and I've written very little. I think it is because life has been rather…intense for the last year. The more stuff I have to cope with the more inclined I am to not write because who wants to hear about the downside of life? And that thought leads me to wonder how many people are feeling the same way. How many other people also withdraw because they don't want to share their sorrows. We don't seem to have problems sharing our joys, and let the hard times roll and most of us clam up.

I think I'll use this blog as a place to share whatever comes to mind on any given day. Perhaps if I am able to open up and share both the ups and downs, then other people will be encourage to explore their own ups and downs.