On the support group I participate in a parent recently posed the question about how to best support their child with RSD. Her plea came from a place of love because she has seen on the boards many people complaining about their friends/families ditching them not long after the RSD diagnosis. As a caregiver she is also affected by the RSD and has felt the loneliness of friends who just don't know how to support her through this trying time. Knowing how it feels she doesn't want to make those same mistakes. She asked us, what is one positive thing we as caregivers can do to make your life better and one thing we shouldn't do?
I have always said that it is important to find a support system. In our support group we often hear of bitter experiences where friends have stopped calling or coming around after the RSD diagnosis. Battling RSD means we have had to change, our new normal barely reflects the person we used to be. It is in the midst of this change that many friends back away. Maybe you liked us because we would go out with you on a Friday night dancing and drinking. Now, that lifestyle is just not possible but it doesn't mean we wanted to give it up. We would still love to hang out with you on a Friday night but we can't drink anymore because of our medications and we can't dance because we care barely walk. We can't even go out to listen to the music because the vibrations from the loud music travel up our bodies and cause even more pain. We don't want to ask you to do something different, we want you to be a good friend to choose an activity that doesn't cause pain! It is the fact that you are incapable of thinking like this that makes us wake up to the type of friend you are. A fair weather friend. That is why it is appalling to us when the "fair weather friend" accuses us of not being a friend to them, of not calling because friendship is a two way street. We don't have time or energy in our day to day battle to suffer such fools.
What ever strain RSD might cause on friendships it does help shine a light on those gems that might have been overlooked slightly. The friend who drives an hour out of their way to help you clean and organize your house. Walking slow next to you while you fight the pain just so you can go shopping. Hunting down the handicap elevator at a stadium so you don't have to walk the stairs and then leaving 10 minutes early so you don't have to walk through the crowd. A friend who helps drive you around when there is a family emergency. The friend who gingerly paints your toe nails knowing that you wish you could get a pedicure. The two hour phone calls that keep you distracted. The lack of phone calls for weeks at a time, because you really are not in the mood to talk. The funny pictures sent to make you laugh, knowing you are having a bad day. The understanding that comes from those friends when you miss the important events in their lives because you couldn't leave the house. Knowing when you are in pain but don't want it to beat you. It sounds amazingly simple these small things that make friendships shine. Yet only a few people in your life can live up to these abilities.
Losing friendships is unfortunately a side effect of life with RSD. It is a heartbreaking condition of life. I am encouraged though by the friendships I have held on to. I am encouraged by listening to others tell stories about their caregivers giving them awesome support. I am encouraged by the Mother who wants to learn what she can do and not do so she doesn't fall into that category! RSD cannot be fought against while we are alone and lonely. We need a support system! Even if you find yourself in a situation where you once had 10 friends and now only have 2 that you can call true. Focus on those 2 and say goodbye to the 8 who could not stand up to RSD for you. RSD is hard enough to fight, don't waste your energy on those who are not willing to be a real friend. Take some time to be thankful for those friends who continue to stand by your side and help you fight.
Friday, October 25, 2013
Tuesday, October 22, 2013
Coming soon - RSD Awareness Month is November
November is RSD/CRPS Awareness Month.
Many might not realize that I have been battling RSD for over 18 years now. I am lucky that I have a pain management program that works relatively well. Maintaining that management program has come at great risk and cost, leaving me disabled from the ability to work. The benefits though far outweigh the cost as I have the chance to live a good life and care for my family. I may not be in remission (I could only pray for that day) but my RSD is manageable. My RSD will continue to be a daily battle but I consider myself on the winning side.
I consider myself a proactive type of person. I have set up an Awareness event on facebook. https://www.facebook.com/events/372029616263589/ My personal goal is to get 1,000 people to show support before the end of November. My plan is to blog as much as possible about RSD topics during November. I will be sharing information I gather and my points of view about living with RSD. I have found a website that has a large variety of RSD Awareness merchandise. http://www.zazzle.com/rsd+awareness+gifts Leo plans on buying me a shirt from the site for the coming awareness month.
Monday October 21 2013 was a great day for us in a step towards Awareness. On NBC there is a television show called The Doctors and they did a segment about RSD. http://www.thedoctorstv.com/videolib/init/9967 The woman who was the focus of the show, Kathy, has RSD after someone accidentally stepped on her foot. What I liked best about her is that she finds a way to smile past the horrible pain. She lends her support to others while she is fighting her own progressive pain battle. Her life, like many others with RSD, if centered around her battle against RSD. She is proactive, strong, and hopeful.
What can YOU do to help spread Awareness? First educate yourself so when you do talk to others you at least know what RSD stands for and what it's symptoms are. You can either google RSD, read the posts on my blog, or ask your loved one about their personal experience. Everyone has their own story. Too often RSD'ers feel isolated in their struggle but when you earnestly ask them about what it is like to live with RSD you will find that they will open up. Once they open up to you they will instantly feel supported and feel more comfortable leaning on you. Next, simply wear an orange ribbon, update your status on Facebook that you support RSD Awareness, and tell 5 friends. Do not worry that you do not understand everything about RSD. Unfortunately no one fully understands RSD! RSD was first documented during the Civil War, termed Causalgia but it is grossly misunderstood, misdiagnosed, and under researched.
How can WE change that? The RSD community has already made great strides in the past 15 years. Still we struggle to find a reasonable pain management program. Back when I was first diagnosed I had to travel 2 hours to find a doctor who was able to treat RSD. Now there are pain management clinics everywhere. I have had the opportunity to witness the growth within the medical community. I remember the first time I heard about Ketamine Coma it was only being performed in Germany and Mexico because the United States FDA deemed it was unsafe. Dr. Schwartzman became the leading doctor by refining the drug treatment into an infusion type protocol making it into a safe, awake treatment program. Ketamine is just one type of treatment program available, yet nothing gives long term or even permanent relief. Research has been done that proves RSD/CRPS is the most severe form of chronic pain. Imagine living your life in that constant state, or at best having a few days of relief before being plummeted back into that high level of pain. That is why we need awareness. That is why we need to stand up to pain and say we deserve a cure. That is why we need your support!
Many might not realize that I have been battling RSD for over 18 years now. I am lucky that I have a pain management program that works relatively well. Maintaining that management program has come at great risk and cost, leaving me disabled from the ability to work. The benefits though far outweigh the cost as I have the chance to live a good life and care for my family. I may not be in remission (I could only pray for that day) but my RSD is manageable. My RSD will continue to be a daily battle but I consider myself on the winning side.
I consider myself a proactive type of person. I have set up an Awareness event on facebook. https://www.facebook.com/events/372029616263589/ My personal goal is to get 1,000 people to show support before the end of November. My plan is to blog as much as possible about RSD topics during November. I will be sharing information I gather and my points of view about living with RSD. I have found a website that has a large variety of RSD Awareness merchandise. http://www.zazzle.com/rsd+awareness+gifts Leo plans on buying me a shirt from the site for the coming awareness month.
Monday October 21 2013 was a great day for us in a step towards Awareness. On NBC there is a television show called The Doctors and they did a segment about RSD. http://www.thedoctorstv.com/videolib/init/9967 The woman who was the focus of the show, Kathy, has RSD after someone accidentally stepped on her foot. What I liked best about her is that she finds a way to smile past the horrible pain. She lends her support to others while she is fighting her own progressive pain battle. Her life, like many others with RSD, if centered around her battle against RSD. She is proactive, strong, and hopeful.
What can YOU do to help spread Awareness? First educate yourself so when you do talk to others you at least know what RSD stands for and what it's symptoms are. You can either google RSD, read the posts on my blog, or ask your loved one about their personal experience. Everyone has their own story. Too often RSD'ers feel isolated in their struggle but when you earnestly ask them about what it is like to live with RSD you will find that they will open up. Once they open up to you they will instantly feel supported and feel more comfortable leaning on you. Next, simply wear an orange ribbon, update your status on Facebook that you support RSD Awareness, and tell 5 friends. Do not worry that you do not understand everything about RSD. Unfortunately no one fully understands RSD! RSD was first documented during the Civil War, termed Causalgia but it is grossly misunderstood, misdiagnosed, and under researched.
How can WE change that? The RSD community has already made great strides in the past 15 years. Still we struggle to find a reasonable pain management program. Back when I was first diagnosed I had to travel 2 hours to find a doctor who was able to treat RSD. Now there are pain management clinics everywhere. I have had the opportunity to witness the growth within the medical community. I remember the first time I heard about Ketamine Coma it was only being performed in Germany and Mexico because the United States FDA deemed it was unsafe. Dr. Schwartzman became the leading doctor by refining the drug treatment into an infusion type protocol making it into a safe, awake treatment program. Ketamine is just one type of treatment program available, yet nothing gives long term or even permanent relief. Research has been done that proves RSD/CRPS is the most severe form of chronic pain. Imagine living your life in that constant state, or at best having a few days of relief before being plummeted back into that high level of pain. That is why we need awareness. That is why we need to stand up to pain and say we deserve a cure. That is why we need your support!
Wednesday, October 2, 2013
Groceries
When you don't drive and are legally termed disabled - HOW DO YOU SHOP FOR GROCERIES?
My answer OnLine Grocery shopping.
In my area I have two options. Peapod by Stop and Shop or Shoprite. I have used both but I currently use Shoprite. There is even an app for Shoprite on my phone so when I run out of something I can easily add it to my list, no more worries about forgetting to add something to my grocery list. Remember, with my short term memory loss issues I could walk to the fridge see that I need more ketchup, cheese, yogurt, apples, and hot dogs but when I walk back to my computer I could easily forget one or more of these items as if it were totally erased from my memory. However there are times when I do forget to use the app as I see we need something. When that happens I trust Leo to run back to the store when needed.
Shopping online also helps ensure that I get only what I need. No more quick indulgences. Now, I only buy soda and chips if we need soda and chips. Shopping like this ensures you only buy what is on your grocery list. I can also shop more wisely, meaning I have all the time I need to compare prices. Another great tip is to pre-plan the meals you would like to make and buy all the ingredients you need during this shopping order. When I plan out my meals I take the guess work out on the eternal question "What's for dinner tonight?" If I end up not being in the mood for what has been planned I can easily switch it for a different option because I made sure to buy everything I need for each meal option!
I submit my order with the prerequisite 4 hour lead time. I always choose the option to have Leo pick up the groceries at the store. I like to use coupons and have found this to be the easiest way. If you choose to have your groceries delivered then your coupons are deducted from your next grocery order. At the store a shopper picks up the items you requested however there are times when something is out of stock needing to be substituted or you may decide to just leave it off. When Leo picks up the groceries he drives toward the side of the store at the loading dock designated just for Shoprite From Home. A Shoprite employee will walk all the groceries out to the truck and load it up. Leo gives them the coupons, he pays and drives away! How easy is that? When he comes home he gives me the computer print out of the items I requested, if there were any out of stocks or substitutions they will all be listed along with a record of what you received. We also get a normal receipt. Since I did not spend any energy to go grocery shopping I now have the energy I need to put away all the groceries, with a little help from the boys. Gabe and Leo help carry designated bags to our basement pantry so I don't have to carry anything down the steps. Lucas and Gabe help me put some easy items away, like their juice boxes or the fruit. I also get them to help me with the bags after all the items are put away. Yes I keep my plastic and paper bags!!!
On a grocery day my daily energy is dedicated to the kitchen work; cleaning, cooking and putting the groceries away. Those three things are my limit but I feel self satisfied at being able to do them. It would be so much harder and exhausting if I had to actually do the shopping myself, then put away all my items, and still need to have the kitchen clean and make dinner. In fact it wouldn't be so much harder it would be down right impossible for me. I am so happy that our store has the option of shopping online.
Here is an example of my meal planning
My answer OnLine Grocery shopping.
In my area I have two options. Peapod by Stop and Shop or Shoprite. I have used both but I currently use Shoprite. There is even an app for Shoprite on my phone so when I run out of something I can easily add it to my list, no more worries about forgetting to add something to my grocery list. Remember, with my short term memory loss issues I could walk to the fridge see that I need more ketchup, cheese, yogurt, apples, and hot dogs but when I walk back to my computer I could easily forget one or more of these items as if it were totally erased from my memory. However there are times when I do forget to use the app as I see we need something. When that happens I trust Leo to run back to the store when needed.
Shopping online also helps ensure that I get only what I need. No more quick indulgences. Now, I only buy soda and chips if we need soda and chips. Shopping like this ensures you only buy what is on your grocery list. I can also shop more wisely, meaning I have all the time I need to compare prices. Another great tip is to pre-plan the meals you would like to make and buy all the ingredients you need during this shopping order. When I plan out my meals I take the guess work out on the eternal question "What's for dinner tonight?" If I end up not being in the mood for what has been planned I can easily switch it for a different option because I made sure to buy everything I need for each meal option!
I submit my order with the prerequisite 4 hour lead time. I always choose the option to have Leo pick up the groceries at the store. I like to use coupons and have found this to be the easiest way. If you choose to have your groceries delivered then your coupons are deducted from your next grocery order. At the store a shopper picks up the items you requested however there are times when something is out of stock needing to be substituted or you may decide to just leave it off. When Leo picks up the groceries he drives toward the side of the store at the loading dock designated just for Shoprite From Home. A Shoprite employee will walk all the groceries out to the truck and load it up. Leo gives them the coupons, he pays and drives away! How easy is that? When he comes home he gives me the computer print out of the items I requested, if there were any out of stocks or substitutions they will all be listed along with a record of what you received. We also get a normal receipt. Since I did not spend any energy to go grocery shopping I now have the energy I need to put away all the groceries, with a little help from the boys. Gabe and Leo help carry designated bags to our basement pantry so I don't have to carry anything down the steps. Lucas and Gabe help me put some easy items away, like their juice boxes or the fruit. I also get them to help me with the bags after all the items are put away. Yes I keep my plastic and paper bags!!!
On a grocery day my daily energy is dedicated to the kitchen work; cleaning, cooking and putting the groceries away. Those three things are my limit but I feel self satisfied at being able to do them. It would be so much harder and exhausting if I had to actually do the shopping myself, then put away all my items, and still need to have the kitchen clean and make dinner. In fact it wouldn't be so much harder it would be down right impossible for me. I am so happy that our store has the option of shopping online.
Here is an example of my meal planning
Dinner Menu
Sunday 9-29 - Dad's House
Monday 9-30 - Roast Chicken and
stuffing
Tuesday 10-1 - Ravioli w/Chicken and Zucchini in a tomato sauce
Wednesday 10-2 - Roast Beef w/noodles
and veggies
Thursday 10-3 - Pork Chops w/mashed potatoes and green beans
Friday 10-4 - Mexican Fiesta Night (chicken enchilada, turkey taco, tomalito, and yellow rice.)
Saturday 10-5 - Leftovers/eat out
Sunday 10-6 - Shepherds Pie
Monday 10-7 - Roast Chicken with roasted veggies
Tuesday 10-8 - Spaghetti and Meatballs
Wednesday 10-9 - Braised Pork Shoulder with roasted potatoes and brussels sprouts
Thursday 10-11 - Chicken Pot Pie
Friday 10-12 - Turkey Burgers
Saturday 10-13 - Leftovers/Party
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