Monday, August 6, 2012

What was your week like? As a CRPS Patient like? Must be nice to sit around and do nothing all day huh? Argggggghhhh Sound familiar?


Ok, this has been an interesting week.

Actually it has been an interesting summer. We spent most of it working with some amazing kids, tutoring them in reading. We signed on to this program as tutors, thinking we were going to be helping the people running the program. Instead, with the help of two other wonderful adults we ended up running the program, the four adult volunteers. Thank God for those two other adults! One of them was a professor of a nearby community college and he did a lot, knew most of the kids, and was such a nice guy. Think we made a real friend there. You never know what life will bring. The other volunteer was used to volunteering with Mission trips with her church so this was something new for her. The kids loved her, she was very sweet and even though she felt out of her depth, she was very effective with the kids she worked with.

The kids were so much fun. There is nothing so exciting as seeing the lights click in a child's eyes when  it all starts making sense, when they see an adult tell them that anything is possible if they work hard, that they are smart enough. So many of them are told the opposite, a lot. Mostly at home. The one place where it should never be said.

We tried to give them two pieces of advice.

1) Knowledge is Power. If you learn to read, what you learn can never be taken away from you. People can take away your house, your job, your money, even your healthy can be taken from you. But they can never take away what you know.

2) You can accomplish anything. Don't let anyone tell you that you are less than you are.

Ok, well. That was our summer anyway. It was more stressful than we anticipated but in the end, it was about the kids and the last day of class we had them write a story of their own. Their own book. Anything they wanted. Started our rough. Not sure what to write. These were 2nd-6th graders after all and no one ever asked them to do such a thing before, no one was ever that interested in what they had to share.

But by the end of the hour we had stories ranging from a newly designed solar panel to make cars more efficient, to retail stores that would enable the owners to be successful enough to buy monster trucks to play with on the weekend, to one student who was going to build a series of underground houses, and much more. Like I said, amazing kids.

I have mentioned it here before I think and most certainly on the RSDHope website  volunteer somewhere, anywhere, even if it is only for a few hours. It will help you, help others, and maybe change someone's life!

This reading program was only a little over an 90 minutes a day a few days a week. Even if it was a bad pain week, it was doable. And when you see what some of these kids deal with on a daily basis, you think, wow, they put up with a lot, and made it here just to try and get help to read. I can make it here for a short time to help them.

Ok. How did I get started with that?

Let me finish this tomorrow. I want to do a post on nerve blocks. It is important but I need to rest for a bit. I promise I will finish it.


Ok, it is now tomorrow.

Ahh, the magic of the internet. I bet you didn't even notice I was gone!

One of the problems, (yes there are more than one), with this disease called CRPS, or maybe it is the Fibromyalgia, or maybe it's the CFIDS, or, wait. Let's just go with the CRPS. One of the problems is it is simply exhausting. Just being in chronic pain 24/7 drains you. It saps the strength right out of you. When you add in the fact that because of the disease and/or its' side effects and the medications you take for it and their side effects the chance of getting any kind of quality or quantity sleep is out of the question for most of us.

Now throw in the physical therapy and exercise that a CRPS/chronic pain patient must do every day simply to stay at the same level where they currently are right now, I am not talking about doing extra PT or exercise to improve your condition, but rather the things we must do day in, day out just to maintain; add that in and you get even more tired.

Now for good measure throw in a few extracurricular activities. Nothing spectacular like climbing Mount Everest or bungee jumping or leaping out of an airplane or babysitting pre-schoolers. Let's not get crazy here. Maybe a movie with friends, church on Sunday, perhaps volunteering an hour a week a few weeks a month. Ok, now how tired are you?

Not done yet.

You still have Drs appointments, usually one or two a month. Calls to your Doctor, maybe one to your insurance company as well to straighten out some problem or another. Toss in two trips to the pharmacist, maybe three trips to the grocery store as well.

Just a reminder for all the "normals" out there. Love that word, "normals".  Most, not all, but most CRPS patients suffer from allodynia and other symptoms. The simple medical definition of Allodynia is pain from things/stimuli which do not normally produce a painful reaction. It is an extreme hypersensitivity. What are some examples of things that can cause pain to us that would not normally cause pain?

wind - noise - change in temperature (especially cold) - ice - change in barometric pressure - touch (can be touch of a person, clothing on our skin, even our own hand touching another part of our body, sudden, surprise, light touches are almost always worse than firm touches we know are coming), vibration, water temperature (again, warm is much better than cold)

These are just some of many examples. Any CRPS patient can give you many, many more examples. Some patients may not even realize that this is part of the disease!

Then you add in the pain to all of this and you get an even better idea of how exhausting it can be simply to try and get through the week, month as a CRPS patient, or chronic pain patient.

What is the pain of CRPS like? Funny you should ask. I just happen to have aa link to an article that discusses just that! What does CRPS feel like? 

The reason I decided to write this topic this week was that I have heard from a number of patients these past few months, some who were very desperate, whose loved ones felt that they were either playing the sympathy card, over-emphasizing their pain, over-acting in an effort to gain sympathy from the rest of the family; or from loved ones or family members , or even friends who told them that, and I quote here because the quote is almost always the same, "It must be nice to sit around all day and play video games. I wish I was on Disability!"

Now I know how these patients responded. Mostly with tears. They were heartbroken, that their loved ones, parents, siblings, and in two cases, husbands, felt this way. That they were simply sitting around enjoying being on disability, having this "little disease" so they could play video games.

I also know how I responded when I got these letters. I cannot repeat the words here that went through my head or came out of my mouth and it was fortunate that I was not present, live, in the room when these people said these things. As angry as I was, am, it also broke my heart for those patients, knowing the agony they endured, endure daily, and yet their very own loved ones still doubted their veracity; still doubted their suffering, still did not understand the agony of their everyday lives. How then would they be able to help them recover and move forward?

How do get across to these people what it is like to have this monster inside of you, have all of these strange and disturbing and bizarre symptoms  going on at the same time and finally learn it is actually ONE disease, finally get the correct diagnosisif you are lucky after only 3, 5, or 8 Doctors and then still have your loved ones not believe you!

So folks, what do I tell these patients? How do they convince their loved ones that life on SSD is not all peaches and cream and X-Box? That it is more than a full-time job to have a chronic illness, as described above; there is more than enough to keep you busy every day just to stay even with the disease and not lose any ground! That the pain we live with every minute of every day would probably turn that same person who thinks it is a cakewalk into a screaming, crying, help-me-please, huddled-in-a-corner mess inside of ten minutes?

Fortunately for them, we would never want our loved ones to ever truly know the extent of the agony we suffer, unendingly. It would break their hearts if they were able to actually plug-in to our bodies and feel it, even for a minute. So as much as we think "If only there was a way for my "Dr", Husband", "Parent", "WC Attorney", etc. , to be plugged into my pain, just for a few minutes to see what it was like, the reality is we do not want anyone else to feel what we feel.

But there has to be some way, doesn't there? Let's figure it out. Let me know your suggestions.

send them to me!

I will post the best answers in an upcoming post here.

In the meantime, please folks. Let us all just try and help each other. enough with the hate. Time for healing. Too many boundaries everywhere, for far too long.

Peace and freedom from pain, they are all we seek,

Keith Orsini
American RSDHope

PS - If you have not gotten your copy of the National CRPS Awareness Ribbon for your Facebook Page or website, personal or business! Help spread awareness!!! Send me an email, at the address above. We also have a smaller size of the ribbon for those who want to include it in the emails they send out to people all day long! We do not charge for this jpeg file of course. It is copyright protected though. But if you have something special you want to do with it, let us know. We might say yes and send you a permission form!  Someone recently added it to their body as a tattoo! Another is going to use it for a fundraiser!

We will also soon have ceramic ribbons that we can share at cost, it will be the national ribbon, they look amazing! Get some for your support group, Facebook group, fundraiser, school, family, whatever. You can even get the awareness ribbon for your car! nearly ten thousand cars across the country are already showing their awareness for CRPS, and thousands of websites, Facebook pages, and emails are now starting to zip across the web with the ribbon on them. Join the wave! 

Send an email to RSDHope and ask for the ribbon in the large size for the website or Facebook page or the smaller size for email, or both!

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