Friday, November 30, 2012

An RSD Dad


Another poem by Nate McDonald...a true depiction of an RSD parent and a reason for raising awareness!
Today may be the end of RSD Awareness Month but it is not the end of our crusading!  


As I watch my kids run and play,
It makes me think of better times and better days.

Days when there was no pain, no ouch,
No sitting all day no best friend…Mr. Couch.

No medical worries, no bottles full of meds,
No I can't move today, I'll just stay in bed.

No I can't play with you son,
I know all you want to do is run.

My legs and feet are hurting too bad,
Please son don't be upset, please don't be sad.

What's that sweetheart you want to kick the ball,
Daddy can't - it feels like daddy's kicking a wall.

So the dads are taking the girls to Knott's Scary Farm, huh,
Well this dad can't walk that long and to my body will do more harm.

And even if I use my wheelchair and decide to go,
I don't want the other dads to get mad that I'm taking too long or going too slow.

And I can't get on rides and be jerked around,
So I would have to watch from a distance and see the fun from the ground.

When I watch my kids play it takes me to better days, and a better me,
A time more enjoyable, a time with no RSD

An RSD Poem

This is an RSD poem that was written by Nate McDonald, a fellow RSD-er who is struggling with the disease and facing a couple surgeries in the near future.  He could use our prayers and support.


3 years ago my ankle hurt and didn't know what was wrong,
We tried to get help but it got worse because the insurance took too long.

The pain started to spread and come up my leg,
We were at the mercy of work comp and we even started to beg.

Please help its spreading and I don't know what to do,
Please help me get better so I can walk like you.

But you didn't help and this disease took over my body, limb by limb,
And the future of being cured started to look grim.

Now from head to toe my body is consumed with RSD,
And the doctors feel that they can no longer help me.

Since I wasn't magically cured with what the doctors did,
Their patience is gone and with me they want to rid.

Rid themselves of someone who won't heal and go according to plan,
They will find a new patient that's healable and know they can.

In the meantime I sit and get worse,
And I'm mad, angry, depressed and ready to burst.

So now full of RSD from toes to head,
You didn't help me even when I pleaded and begged.

Wednesday, November 28, 2012

My AHA Moment!

I have been planning to write in here for a week now, yet it wasn't coming together.  Although I've been super busy editing the new books, it was more than that; it was a heaviness that I couldn't explain.  And it didn't make sense, since so many things are falling into place.  Then, today, it hit me, that this week is the second anniversary of my being bed bound!  Wow...what a jolt!  I knew instantly that that was the cause of my heaviness...and, strangely, the heaviness seemed to evaporate, with that awareness.  Just like the times that I experience heaviness for days or weeks before an anniversary of a loved one's death, and then feel fine after it's over.

So I hope and pray that everyone's heaviness, from whatever source, is being relieved, and peace is being  restored.  Though Thanksgiving is over, may our gratitude remain.

Saturday, November 17, 2012

Tara's Tips


When Jane asked me to write a post on her blog, after I got past the flattery, I wondered what will I write about? Knowing me, and my Adult Attention Deficit Disorder, it will be a little of a lot of different things.

November, as I am sure we all know, is RSD awareness month. After 17 years of my spouses suffering with RSD I am all too aware of RSD. I do, however, try to seize upon each and every opportunity to promote awareness of RSD. I actually have a couple of “catch phrases” I like to use. One being “You Can’t Cure a Disease Nobody knows about”. There is also the unforgettable, No Awareness+No Research=No Cure Know Awareness + Know Research= Know Cure! Pretty catchy, if I do say so myself. I also try to use what experiences we have gone through to try and help those who are new to the world that is RSD so that they may have an easier excursion through its vast and ever-winding expanse.
Before I go into my “tips” let me provide a wee bit of background for those who do not know my RSD story. My husband has RSD. He had fallen off of a twenty foot ladder while holding a ten speed bicycle. He was a toy store manager. He was 24 years old. Ironically, at the time of this incident, we were separated, and were about to begin divorce proceedings. I was not informed of his accident until he told me when he came the next day to collect our son for visitation. His fall caused him a torn left rotator cuff. It was only recently that I was told how when he was at the trauma center, and the doctor came in, amazed, and he told my husband “You haven’t broken any bones”, that he went on to add almost ominously, “but you may wish someday that you had.” My husband said that it did not even register to him that it was said until years had passed. “He said it like he knew, like he expected this” my husband said when he told me the story, “but how could he know?” I wish I knew the answer to that. I sometimes obsess over it. If he did know, would he say “One day, well after this should be a memory, you will be left with a disease, so painful, and it will be the most painful known to medical science?” Would he tell? Would he say “And this disease, will affect every single body system, your skin, your nerves, your bones.” Would he tell him that “this disease will not only hurt worse than you could ever imagine, but it will age you, and this torn rotator cuff, while it’s in your shoulder, will cause you to one day need to use a wheelchair, and have a pump implanted in your abdomen so that pain meds can run directly to your brain 24/7, but even with this just getting off the couch to pee will hurt like someone is slowly torturing you?” Would he tell him? I doubt it. Scratch that. I know he wouldn’t. There would be no point. I have never seen a doctor tell a cancer patient, regardless of how extensive their illness, that “Well, we are going to fill your veins with so much poison, that sometimes you will ask for God to just take you now. You will vomit while chunks of your hair fall out, and well, if the treatment works, well, there is still a chance to have it return later and even worse.” Why would they steal the hope away from the patient? Sometimes, that is all they have.
After 17 years, all the things the doctor in the trauma center anticipated...they happened. More and more things just like it happened too. We ended up losing everything we had. We had to live with our two children, in his parents’ home to await the resolution of our fight for his Social Security Disability Benefits. That took nearly five years. My husband was fortunate enough to have a remission of his RSD. Very unusual. More than very, he was not diagnosed until 3 and ½ years had passed since that fall. Hindsight being 20/20, he showed all of the classic signs and symptoms of RSD early on. Saddest thing is no one knew what those classic signs were. We went from one discipline of medicine to another, all with the same question. Why does this pain not end? He was a drug seeker, addict, and liar, lazy. You know all those things that people who are hard to immediately diagnose are. Oh and he was crazy too. Somehow forgot that one. The few days locked in a psych facility, being cavity searched at random intervals and denied medical care, how did I skip that?

Fast forward, to twelve years after the “fall that changed it all” I go to school to become a Licensed Practical Nurse. Should have been RN, but I had three men to feed, a little window to get some education done, and those back pay dollars wouldn’t last forever. I quit one job, reduced some hours at the other and managed to graduate with honors. Well before RSD even came into the picture, I wanted to do it. I did not, because I feared failure husband had a good job, he will take care of me. Remission has a way of making people forget. Forgetting makes people complacent. Complacent is never a good thing.
Because of RSD, I really wanted to be a Nurse. When I completed school, I had a job where I was making way more money than I could starting out as a Nurse. But the Nurse thing was a good back up. So I managed a gift shop. I was better to have as an escort for friends and family when they had doctor appointments, but that was really it. The LPN did however make me become much more aware of how issues can arise when one has a chronic illness. Even with a couple of issues I myself have experienced since obtaining my Practical Nursing License I learned that I never offer that I have it when seeking medical care, whether for me, one of my family or a friend that has asked me to accompany them to an appointment. It’s not that I am going “undercover” but it showed me the difference in the treatment when you reveal that “You know the lingo.” It is actually quite funny when the point is reached, when I am getting handed a pile of crap as an appetizer from a “professional” and I KNOW that it’s wrong, wrong, wrong. That is when I say “But Dr. (or other practitioner,) as a Nurse”, or “In nursing school”, and the response is a shuffling of papers, or the screeching of the tires as the total direction is changed. I admit, it never ever gets tiring, seeing that. I then get a totally different reaction. Not that I am given the key to the medicine cabinet, but there is a definite and palpable change in the atmosphere. This leads me to the tips I mentioned, so far back. (I did, you will recall, mention the A.D.D early on in this post.) So here it is,
The learn from someone who has been there, done that” guide to successfully navigating doctor visits with RSD.
  1. Always have a list, and a pen to take notes or someone with you to take them.
  • When you are at a doctor, there are many things that will prevent you from catching and grasping all that is being said. The language, just one or two “Huhs?” and the majority of what was said is gone. You try to figure out what that big word is, and you miss the rest. Someone else there would have been a back up copy so to speak. They could help fill in the gaps.
  1. Try to gear the list to the Doctors specialty.
  • For instance, if you are seeing a Neurosurgeon for the first time, do an internet search using something like “Neurosurgeons and RSD” to help give you some idea as to what you MAY expect. Then gear your list accordingly.
  • This will help maximize the visit. You will leave with less, “Oh I forgot to asks...” and “What did he says…?” When you have jotted answers onto the paper.
  1. Remember why every single person working in that Doctors office has a job.
  • The Doctor and everyone in his employ, they get paid for providing a service. They provide that service to you. Do not accept treatment that you would not accept from anyone else you have called upon to provide you a service. If your plumber said you were crazy after he was called to fix a toilet that he said was not clogged, would you have him come back the next time you needed a plumber? Do not return to a provider that does not treat you as though you have valid complaints.
  1. If you do not understand something, ask for clarification.
  • Again, you are paying, or someone or some insurance company is on your behalf, for a service. If the mechanic for your automobile said he had to change the “flux capacitor” in order for you to be able to drive it, would you just let him? Because the “flux capacitor” is what enabled Michael J. Fox to go back to the future. Cars don’t have those. Get my drift?
  1. Remember, specialists make their money, on doing what they specialize IN. Surgeons, they heal by SURGERY. General Practitioners, they use their prescription pad. See more than one type of doctor. Explore a variety of treatment options.
  2. If you want another opinion, get one. Do not worry about “hurting the doctors feelings” by suggesting you would like one. Firstly, they are supposed to NOT HAVE their feelings involved in their patient’s treatment. That’s why surgeons are not supposed to operate on their Mothers. Feelings do not belong on their end of the relationship.
  3. Educate yourself as much as possible. You do not have to get a Harvard Medical degree to be able to advocate for yourself as a patient, but educate yourself as much as you are able, and do so a little at a time as too much at one time will just overwhelm you, but you will see that your communication improves between you and the doctor, and your care will reflect that.
  • Do not, however, believe ALL that you read and hear. Consider the source. Is the source of this information trusted? Is the source someone trying to sell you something? Verify credentials. Every state has a site where you can verify professional licenses, etc. Remember also that the Internet is NOT a University of Medicine. Wikipedia is not a substitute for a physician.
  1. Remember this illness, is what YOU live with. The doctor, does not live with this 24/7, 365. This ship is YOUR OWN, and you are CAPTAIN. The ship will go in the direction that you steer it.

Do not get me wrong. There are mistakes that we all learn from. Every single tip, I provided, I know them because we did the complete opposite of what I have written there. I have been too afraid to question a doctor, and that led to staying with incompetent and incomplete treatment. I have also been thrown out of many doctors offices. Sometimes that is a blessing in disguise.

First and foremost, remember, currently ALL Doctors, and Nurses are HUMAN. They are subject to all that goes with that designation. They are able to make mistakes. Until they develop a completely “free thinking” robot to replace the Human Doctor and Nurse, you are subject to the consequences that come with being treated by those humans.

Good luck and good health to all who are living with the burden of RSD and all that it brings with it. Thank you Jane for having me write this post! Here is to a day, and I pray every day that it’s soon, to an end to RSD!


Written by Tara Mandinec



Monday, November 12, 2012

Living Through Memories


         It must be about 4:30 am because I hear the Farmall tractor pulling the wagon outside my window. Many years ago, I would have been on that wagon. I see the sun coming up, hitting the dew on the green cornstalk just so, to glisten perfectly in the sun's first light. The morning birds are chirping and all of the corn pickers are tasting the fresh, uncooked sweetness of the juicy corn. That was always the best way to eat sweet corn. Now, as I have gotten older and not picked corn in many years, I am always excited for the years that the infamous Hadley corn is ready when I am home in the summer. Hadley corn is shipped through Massachusetts and other local states because it is so delectable. The dirt in Hadley, Massachusetts is like no other that I have ever put my hands or feet into. It is soft like flour and feels quite nice to walk in. I always took my daughter and nieces looking for worms. We would take off our shoes, sit down and start digging, mostly to play with them wiggling and squirming in our hands and over our feet. If we had time, we would save some to go fishing with. I had grown up fishing by the river. Listening to the quiet flow of the river over the rocks, and the wind whistling through the trees, was a peaceful place like no other.

In the autumn, when I am lucky enough to visit, the trees are the most beautiful crimson, orange and yellow. The pumpkins are harvested and the Indian corn is ready. The autumn is full of wonderfully bright, uplifting colors and there is a nip in the air to tell you winter is around the corner.

Winter is my least favorite time to visit but, if I visit then, I enjoy FRESH fallen snow and watching it from in front of a fireplace.

I visit in late spring often, which means the robins are building their nests. Hadley is called “Asparagus Valley”; thus, it would be the time to pick and eat asparagus. When I was younger and in school, we actually were able to come to school late because we were picking asparagus. But now, I usually get there at the end of the season, still having the chance to eat some. One of my daughter’s favorite things to do when she was younger was to pick strawberries with her cousins. The girls would run to get their baskets (four girls in all). The excitement was over whelming. It was the end of the season so the berries were always really red, sweet and succulent. More berries went into their mouths than into their baskets so it always took us a long time to fill each basket. Nicole, my daughter, was always jealous of her mom helping the girls fill their baskets. Nicole, who is the oldest of the four and now a teenager, still enjoys picking but would rather buy them already picked sometimes.

I used to stay at my grandmother’s house, until she passed away. My uncle bought the house and remodeled it a bit. The house was built in the 1800’s, so it is historical and can only be remodeled a small amount. Last time I was back home I did have time to go see it due to a family situation.

I have lived in Arizona now for twelve years and I love it here. The trip back home is anywhere from 5 to 8 hours, depending on layovers. Most years, we take at least one trip in the summer and, occasionally, an additional trip. Last October, my aunt passed away and I was not able to be home for the services, but wanted to provide comfort for my mother. I didn’t know then that it would be my last time there. The town that defined me, I will never see again. If I had only known, I would have walked in the dirt, gone fishing, and visited my grandmother’s house for the last time. There are so many things I would have done. When I was a teenager, I never thought I would ever leave Hadley. It was my place, it was who I was, but one day I needed to leave because it was best for me. Now, years later, I am going through the grieving process. It may sound strange to some but my heart breaks because most of my life I lived there, and who knew I would never go back.

Which leads me to my RSD story. I thought I could pin point when I got RSD, but now I am really unsure. What I am sure of is, last October when I went home to visit my family, I was having a severe problem with my left arm. When I finally got diagnosed in November, it was throughout my arm (from fingers to shoulder and down my shoulder blade). Mind you, I knew for sure I had this issue for at least a year prior, starting just in my hand. It moved its way up in that year. It took some time for me to find a pain management doctor that not only treated RSD but one who actually knew about it. That was the hard part. Lots of doctors say they treat RSD, but they don’t really know what it is. At least, it doesn’t seem like it out here. Part of the issue is mainly just saying “let me research that and find out because I’m not sure”, rather than saying you know when, in fact, you don’t. My doctor, however, did his dissertation on RSD. By January, my knee seemed to be feeling the effects of RSD already. We started by doing ganglion injection for my arm, but that made things worse. When I woke, I was in horrific pain and discovered the RSD had severely moved to my leg. This doesn’t happen to everyone, and my doctor was actually not even notified when I woke up screaming. He called me on a Saturday when he heard of the condition I was in. He has been treating for 20 years and he had never heard of this happening. I was now walking with a cane at 37 years old. I was then laid off from my job. I still wonder if it had to do with walking with a cane. Next, I tried a Neurotransmitter for my upper left, meaning my arm. I had slight mirroring to my right side prior to the transmitter, then full blown mirroring after the transmitter. But we are not sure if that was coincidence. Well, all in all, October 2011 I had RSD in my arm. By April, I had RSD in all my limbs. Now, a year later, I have RSD in my entire body. Yes, every part of my body, even the unthinkable. My eyes, my ears, my scalp; like I said, even parts you can’t imagine.

It sounds awful. However, I have a beautiful teenage daughter, I hold a full time job and I have a more positive attitude now than before being diagnosed with the RSD. My job is not an ordinary 9-5. I teach Kindergarten, which is extremely difficult for me this year. This is my 12th year teaching Kindergarten but I now have little to no range of motion or strength in my left leg. I cannot bend it, so getting down to their level is hard; as is sitting on the floor. I do it. It’s just not easy, and makes for extra pain. They are very touchy feely at this age so I come home in more pain than I want to be. It sounds easy to say teach another grade or get another job. However, I was a pre-k teacher for 8 years (yes I started teaching very early) and k for 12 years. When this is what your resume says, it is hard to find something else. I have tried. I also love my job. Despite the pain, the children do make me smile and laugh and it is great pleasure to see them learning.

This blog post was meant to do several things to bring awareness... Awareness that you need to do things that you can for as long as you can, with pain if you must. Not everyone loses their ability to walk, write or do any of those types of things but I firmly believe that you should know that you could. I myself walk with a cane for several reasons; one being that, in a matter of two weeks, without using a cane my muscles in my right leg worked too much and have disease muscle atrophy. If I continue to walk without the cane, I could end up in a wheelchair sooner rather than later. I live with that knowledge and that is one of the reasons I continue to work and walk with a cane because one day I may not be able to at all. Now it is hard, agonizing and nearly impossible, but still possible. I try doing everything like it may be my last time. Here are a few things, for instance, that I can’t do that was every day for me. No more heels, no more driving at night or far distances , or after a long day at work. I have help, yes, but I do not feel dependent. I have people help and support the decisions I have made. My support system is smaller than some and larger than most, and very well educated about my disease. They have taken the time to become a part of my disease by being supportive. I am not unlike the people that have family that doesn’t understand, or that don’t believe them. They (family) are far away and it is their loss to not see me and understand. The RSDer needs to be educated, so I started by reading “IN THE BLINK OF AN EYE”. I have not had RSD long but it came at me with a vengeance, attacking all of me. I learned as much as I could. One way I did so was by receiving a mentor through RSD Hope. She is a wonderful, uplifting inspiration to me. She has taught me an immense amount about RSD, talked me through some very tough nights and I have made a genuinely great friend from a horrible experience.

Please find the good in everything. Believe it or not, it is there. Sometimes you have to search a little harder than others. Sometimes it even will make you laugh...just because.     


Written by Heather Wilda  

Tuesday, November 6, 2012

I Can't Explain It.

A strange thing happened on the way to awareness...I was subdued.  Yes, me.  I'm so used to speaking out about RSD but yesterday, the official "RSD DAY", sort of seized me; not in a depressed way, but in a serious, halting way.  Somehow I found myself needing to be quiet and still.  So that's what I did.  I kept to myself and pondered my life with RSD and read story after story that some of you had posted of your lives with RSD.

I'm finding this Awareness Month to be extraordinary.  People are sharing like never before and I'm proud to be a part of this powerful force.  God bless everyone who lives and copes with this monster so courageously.  May each and every one have an ally, a support and a hope.

Blessings,

Jane

Sunday, November 4, 2012

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.

Friday, November 2, 2012

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. .

Thursday, November 1, 2012

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