Last night was picture perfect. We went to my sister in-laws for her birthday. We had dinner and cake. Then we went to Gabriel's Taekwondo Sparring class. After class Leo had an in door soccer game to get to so I had the night with my boys. While Gabriel was in the shower I set up a movie and got busy with our hot air popper to make some Popcorn. Watching "Rise of the Guardians" I sat in the middle of couch, popcorn on my lap sandwiched between my boys. My type of evening! Before the end of the movie Gabe was fast asleep but Lucas wanted to watch it again. I was comfortably snuggled in and thought, why not. Lucas fell asleep after 15 minutes on round two and that was when I felt it. The icy cold burn and the way my foot began to swell inside of my sneaker. Damn, not the ideal way to end the perfect evening. My SCS controller was inside my purse on the coat rack. I sent Leo a text letting him know the situation. Even if I managed to get up off the couch I could never get Lucas up to bed. I was stuck. I was litteraly stuck on the couch because I worried that if I got up I would wake up Lucas. If Lucas were to wake up he would need his intensive cuddling. I love the cuddle but I didn't think I could handle that and my pain right then. So, even though my leg was killing me I chose not to get up and use the SCS yet. I chose to try and wait for Leo to come to my rescue. He did and having him home made everything seem so much easier.
When I woke up in the morning I did not need to test my leg for pain, I felt it with my first cohearent thought. I was also subconsciencely tenting the blankets with my good leg so they wouldn't bother my bad leg. Last night I had used my SCS on the sleep program. My first step out of bed showed me that I couldn't even bear weight to limp, I had to pull my leg behind me to get to the bathroom. My morning was beyond slow. I am ever so grateful that Gabriel is of an age to be a helping hand and is considerate over when my leg is hurting. He played with Lucas' while I took a long hot shower, letting the hot water seep into my leg and chasing the cold away. Because Gabriel was a great help I let him play video games without the prerequisit typing program for 15 minutes. Gabe played while Lucas and I took a rest in my bed.
I did not get any cleaning done today. I did get to go shopping at Walmart for our last minute Easter stuff. Leo dropped me off and I had time to walk slowly and shop. Tonight Leo took Gabe to the movies to see the new "G I Joe". Lucas and I have ordered pizza from Papa Johns. I am tasking myself with boiling the eggs tonight, all 36. If I get a sudden burst of energy and motivation I might empty and restack the dishwasher. I cannot hope that over night my flair will subside enough that I can manage all my chores tomorrow. All I can do is focus on the things that must get done. Eggs must be colored and in a way that produces a lot of laughter and giggles. Easter baskets must be dug out of storage. The kitchen must get cleaned up as well as the living and dinning rooms. To accomplish all these tasks I will have to enlist the help of Leo (he is a powerhouse) and Gabriel (he will do anything to make me smile). Lucas will be a big help if he can stay happy not cranky and will simply follow directions (tall order).
Our Easter Sunday plans are our traditional chaos. Sunday morning wake up (7:30ish) and check out the baskets. Hunt for Easter eggs that the Easter Bunny has hidden for the boys. Get dressed up, make sure we have everything we need for the day and head out to Church. After mass we drive down to my parents (about 45 minutes) and have an Easter lunch. They will also hide eggs for the boys to find and have baskets for them filled with goodies. Then we drive to Leo's parents house (45 minutes) for an Easter dinner. They will also hide eggs for the boys to find and have baskets filled with goodies. By the time we get home the kids have been filled with food and sugar. Leo and I are often ready for bed ourselves. With my leg hurting these plans do not change. I just fight through it and will NOT let my children see a single cringe. RSD will not ruin this holiday. I will use my cane and help them hunt for their eggs. When they hit their sugar high I will not let my pain create a cranky situation, instead I will laugh and shrug my shoulders saying "It's only one day!"
I can crumble tonight when everyone is in bed. I can crumble on Monday after making another successful Easter memory for the boys. I will not crumble in front of my children during Easter. I will stay strong and create the magic of the holiday.
Friday, March 29, 2013
Wednesday, March 27, 2013
This morning ...
I am thankful the kids are on Spring Break because we do not have to get up and moving so quickly and early. I need that extra time in bed to lay prone and gather my strength. When Lucas finally wakes up I begin to move. I do my little roll to get out of bed. First stop is the bathroom with Lucas sitting by me and I do a quick diaper change with him standing up. After washing my hands I yell up to Gabriel's room, "Come downstairs for breakfast!" He replies "I'm not ready yet!" Okay to this I laugh quietly and tell him "Ten minutes okay?" He replies "That's all I need to finish this battle!" I love that he still has his great sense of imagination! He likes to play Yu Gi Oh! and all those other types of card games.
Downstairs I stand in my kitchen and contemplate the time. On the way down the stairs I couldn't help but notice the total disarray of the living room, toys everywhere, blankets and pillows cast around the floor, sticky surfaces and the floor needs a good vacuuming (it actually needs a deep shampooing but let's not get that picky). As I walk into the dinning room I see the table is piled up again, we still have birthday decorations up and the coat rack is heavy with our winter coats. I estimate it would take me an hour to fully clean the dinning room the way it should be done but if Leo did it he probably could get it done in 15 minutes flat. I sigh and move into the kitchen. This is where I cringe. Yesterday I halfway stacked the dishwasher but never finished it. I made spaghetti and meatballs for dinner last night so the pots and pans await me on the stove, the stove itself needs a good scrubbing to clean up the splatter. Now here I stand. Three rooms need a deep cleaning. I have only been out of bed for 15 minutes. My body aches. I cannot possibly do anything productive yet. I stare at my medicine cabinet. I pull out a fresh Fentanyl patch (yesterday's fell off a day early after my shower) and I count out the days on my calendar. Each Fentanyl patch lasts 72 hours, that's 3 days. I put this one on now at 8:30am Wednesday it will last me till Saturday morning. This is my last patch in the box, a new prescription is being mailed out to my pharmacy. I put this patch on with confidence that I will have my new prescription before the weekend, I will need my medication to get me through Easter weekend.
Judging my body I know this patch will not be enough to get my body feeling well enough to plow through my chores today. I take a percocet to help give me a boost. Repeating to myself 8:30, 8:30, 8:30 so I won't forget what time I took my meds. With short term memory issues I have found this is the best method to remember what time I took a percocet, just in case I find myself hurting later and needing anothter percocet to help me get through. A percocet lasts 4-6 hours.
Then I start the process of breakfast for the boys. I think to myself 'Most Mom's consider taking care of themselves first as getting dressed and beautified but for me taking care of myself first means making sure I am medicated.' I turn a blind eye to the mess and focus first on feeding everyone. The pets come first or else they will just be annoying. "Gabe, can you help me feed the cat and dog?" My personal super hero comes running. "I will feed Cleo and you can feed Pharaoh." he tells me. I am good with that since Gabe hates touching the canned dog food, it makes him gag. After the pets are taken care of I move on to the boys breakfast; I put the tea pot on to boil for Lucas' oatmeal and I put a toaster waffle into the toaster for Gabe. I then start the coffee, besides a great wake me up it also helps boost my medications helping them to work a little faster, love that caffeine! I pull out a tall glass for Gabe my milk kid and a superman cup for Lucas to have his dilluted apple juice. I grab a coffee cup and add my purevia then set it aside till I am finished with the boys breakfasts. I have about another minute till everything is ready so I start working the kitchen. I grab last nights dinner plates and scrape them into the garbage, set them into the sink to soak. Gabriel's toaster waffle pops up first so I grap a paper towel, a knife, and peanut butter. I take him his breakfast. Next up is Lucas and his oatmeal. After fixing my coffee I sit down at the computer and I begin typing this post. While I am typing I am gratified with watching my boys play on the floor together. Even though Gabriel never liked Thomas the Train he will sit on the floor and help build the train tracks. Gabe knows all the trains names and does his best to understand what Lucas' wants.
Yes how my body feels this morning sucks and I still need to find the energy to accomplish my chores. Just looking at everything that needs to be done is exhausting. If I cannot get to it all today that means tomorrow's chores will be backed up too. The only reason I am pushing so hard this week is that I WANT a perfectly clean house for Easter Sunday. When I take pictures of the boys and their baskets or the boys looking for the hidden Easter eggs I want to be proud of how my house looks in the pictures. Next week, when Lucas starts his new Pre-School program I will be able to rest.
In the time it took me to write this post, taking a few minutes here and there to talk with my boys and fix a second cup of coffee and a peice of toast, my medications have begun to take affect, relaxing the muscles in my back and easing the pain. I plan to finish my coffee, get dressed and then tackle the kitchen.
Today's agenda! Clean the downstairs. Get the boys out of the house; maybe a walk around the block with the dog. Take Lucas to his 3 year old check up. Fix something for dinner tonight. To me this list already sounds exhausting. I pray that I can accomplish everything and find the energy to play with my boys!
Downstairs I stand in my kitchen and contemplate the time. On the way down the stairs I couldn't help but notice the total disarray of the living room, toys everywhere, blankets and pillows cast around the floor, sticky surfaces and the floor needs a good vacuuming (it actually needs a deep shampooing but let's not get that picky). As I walk into the dinning room I see the table is piled up again, we still have birthday decorations up and the coat rack is heavy with our winter coats. I estimate it would take me an hour to fully clean the dinning room the way it should be done but if Leo did it he probably could get it done in 15 minutes flat. I sigh and move into the kitchen. This is where I cringe. Yesterday I halfway stacked the dishwasher but never finished it. I made spaghetti and meatballs for dinner last night so the pots and pans await me on the stove, the stove itself needs a good scrubbing to clean up the splatter. Now here I stand. Three rooms need a deep cleaning. I have only been out of bed for 15 minutes. My body aches. I cannot possibly do anything productive yet. I stare at my medicine cabinet. I pull out a fresh Fentanyl patch (yesterday's fell off a day early after my shower) and I count out the days on my calendar. Each Fentanyl patch lasts 72 hours, that's 3 days. I put this one on now at 8:30am Wednesday it will last me till Saturday morning. This is my last patch in the box, a new prescription is being mailed out to my pharmacy. I put this patch on with confidence that I will have my new prescription before the weekend, I will need my medication to get me through Easter weekend.
Judging my body I know this patch will not be enough to get my body feeling well enough to plow through my chores today. I take a percocet to help give me a boost. Repeating to myself 8:30, 8:30, 8:30 so I won't forget what time I took my meds. With short term memory issues I have found this is the best method to remember what time I took a percocet, just in case I find myself hurting later and needing anothter percocet to help me get through. A percocet lasts 4-6 hours.
Then I start the process of breakfast for the boys. I think to myself 'Most Mom's consider taking care of themselves first as getting dressed and beautified but for me taking care of myself first means making sure I am medicated.' I turn a blind eye to the mess and focus first on feeding everyone. The pets come first or else they will just be annoying. "Gabe, can you help me feed the cat and dog?" My personal super hero comes running. "I will feed Cleo and you can feed Pharaoh." he tells me. I am good with that since Gabe hates touching the canned dog food, it makes him gag. After the pets are taken care of I move on to the boys breakfast; I put the tea pot on to boil for Lucas' oatmeal and I put a toaster waffle into the toaster for Gabe. I then start the coffee, besides a great wake me up it also helps boost my medications helping them to work a little faster, love that caffeine! I pull out a tall glass for Gabe my milk kid and a superman cup for Lucas to have his dilluted apple juice. I grab a coffee cup and add my purevia then set it aside till I am finished with the boys breakfasts. I have about another minute till everything is ready so I start working the kitchen. I grab last nights dinner plates and scrape them into the garbage, set them into the sink to soak. Gabriel's toaster waffle pops up first so I grap a paper towel, a knife, and peanut butter. I take him his breakfast. Next up is Lucas and his oatmeal. After fixing my coffee I sit down at the computer and I begin typing this post. While I am typing I am gratified with watching my boys play on the floor together. Even though Gabriel never liked Thomas the Train he will sit on the floor and help build the train tracks. Gabe knows all the trains names and does his best to understand what Lucas' wants.
Yes how my body feels this morning sucks and I still need to find the energy to accomplish my chores. Just looking at everything that needs to be done is exhausting. If I cannot get to it all today that means tomorrow's chores will be backed up too. The only reason I am pushing so hard this week is that I WANT a perfectly clean house for Easter Sunday. When I take pictures of the boys and their baskets or the boys looking for the hidden Easter eggs I want to be proud of how my house looks in the pictures. Next week, when Lucas starts his new Pre-School program I will be able to rest.
In the time it took me to write this post, taking a few minutes here and there to talk with my boys and fix a second cup of coffee and a peice of toast, my medications have begun to take affect, relaxing the muscles in my back and easing the pain. I plan to finish my coffee, get dressed and then tackle the kitchen.
Today's agenda! Clean the downstairs. Get the boys out of the house; maybe a walk around the block with the dog. Take Lucas to his 3 year old check up. Fix something for dinner tonight. To me this list already sounds exhausting. I pray that I can accomplish everything and find the energy to play with my boys!
Tuesday, March 26, 2013
Just Breath
We practiced this life skill in our mother's womb. We became experts in our first moment of life. It is our body's natural response to survive. We breath. However when I went to lamaze class during my pregnancy with Gabriel I learned that we don't always breath the right way. Wait a minute, please don't turn away because I know how hard it is to hear. Let me explain. When you stub your toe or step on a lego these are both immediate and extremely painful acts but pay attention to how you breath. If you are a parent you probably took a moment to remember how painful it was last night when you stepped on your kids toys. Did you hold your breath? This is what I mean about not breathing the right way! When you are in pain, your body is suffering through a stressful moment and it needs oxygen to recouperate and heal. By holding your breath you are increasing the pain and not letting your body do it's natural job of healing you. During lamaze I learned how to take deep, cleansing breaths to completely fill my lungs and slowly exhale imagining all the negative air is leaving my body. These slow and deep breaths help relax your body. When you are relaxed you are more able to cope with the stress and pain of the moment.
This is a common practice in Yoga and Meditation. I relearned my relaxation breathing when I went through the rehab program. In rehab I learned to add in a visualization. You pick something that creates a sense of calm; a place in your home, a favorite vacation spot, or a moment in time that you were completely relaxed. It helps to close your eyes until you become an expert at this. My sense of calm comes from the ocean at sunrise. When I close my eyes I picture the ocean with the sun slowly coming up with his soft colors. I imagine the waves and the sand. Then I try to hear it and smell it. I submerge myself into this scene. I take deep and cleansing breathes. I pace my breathing to the waves. The slow swell is my deep breath in and then the foaming white crashing of the wave is my expelling breath. I focus on this image and it helps me let go of the pain that is overwhelming me. For at least a few minutes I can let go of the RSD pain. When I come out of this meditation I am more capable of coping with my pain.
When Gabriel was little I taught him to take deep breathes when he was having a temper tantrum. Most kids have a hard time calming down after working themselves up and then they can get into more trouble because their emotions are running high. With Gabriel I would see this storm building up inside of him and would tell him to take 3 deep and long breaths. When he did this the right way he would calm down. His body was able to get the oxygen it needed and he was able to compose himself enough to tell me what was bothering him. We have solved many conflicts with this breathing. Now Gabriel knows how to self regulate and temper himself, however their are moments when his emotions catch the better of him and he needs the simple reminder to breath.
The next time you step on a toy or begin to loose your temper first pay attention to how you are breathing. If you see that in the moment you held your breath then please "Just Breath"!
This is a common practice in Yoga and Meditation. I relearned my relaxation breathing when I went through the rehab program. In rehab I learned to add in a visualization. You pick something that creates a sense of calm; a place in your home, a favorite vacation spot, or a moment in time that you were completely relaxed. It helps to close your eyes until you become an expert at this. My sense of calm comes from the ocean at sunrise. When I close my eyes I picture the ocean with the sun slowly coming up with his soft colors. I imagine the waves and the sand. Then I try to hear it and smell it. I submerge myself into this scene. I take deep and cleansing breathes. I pace my breathing to the waves. The slow swell is my deep breath in and then the foaming white crashing of the wave is my expelling breath. I focus on this image and it helps me let go of the pain that is overwhelming me. For at least a few minutes I can let go of the RSD pain. When I come out of this meditation I am more capable of coping with my pain.
When Gabriel was little I taught him to take deep breathes when he was having a temper tantrum. Most kids have a hard time calming down after working themselves up and then they can get into more trouble because their emotions are running high. With Gabriel I would see this storm building up inside of him and would tell him to take 3 deep and long breaths. When he did this the right way he would calm down. His body was able to get the oxygen it needed and he was able to compose himself enough to tell me what was bothering him. We have solved many conflicts with this breathing. Now Gabriel knows how to self regulate and temper himself, however their are moments when his emotions catch the better of him and he needs the simple reminder to breath.
The next time you step on a toy or begin to loose your temper first pay attention to how you are breathing. If you see that in the moment you held your breath then please "Just Breath"!
Friday, March 22, 2013
Energy and RSD
You know that feeling. You wake up in the morning with the energy that you can conquer the world. You have a mental list of things that you want to accomplish. You shower and dress. Suddenly your energy is depleated. You manage to get the kids breakfast and ready for school. You barely manage fixing your own breakfast. You have been out of bed for one hour and already you feel like you need a two hour break. You wonder if you will be able to accomplish anything on your mental to do list. Talking about that mental list, you even struggle to remember a few items that were on it or why they were important. The more you push through the worse you feel and the more you forget. It is 10 am and you wish you could crawl back into bed. It is the chronic pain version of the cliched saying "Eyes are bigger than your stomach" in regards to appetite.
If you have RSD this scenario probably sounds familiar. This describes many of my days. I had a great nights sleep. I have plans and appointments for the day. I WANT a clean house for when Lucas' therapist arrives or if we have family coming over. I WANT my kitchen clean and dishes put away to make my kitchen feel warm and welcoming. I WANT to make a healthy homemade meal for my family to enjoy at a clean and properly set dinning room table. I WANT to be able to keep bedroom doors open to show off immaculate beds. I WANT the laundry kept up to date with clothes and towels neatly folded and put away. I WANT to be able to do these things. RSD states that my wants are not resonable with what my current state of abilities are.
Sort of sucks doesn't it? Well, you learn how to adjust and lower expectations. You still feel embarresed when a relative stops by for a visit and discreatly washes your dishes and straightens out your dinning room table. You fully appreciate their help because it is not their responsibility to help out. As embarresing as it is there are days I still pray that an Angel will descend from heaven just to help clean up. Saturday's my husband will steamroll the house and quickly straighten it out and clean it up. I will watch silently, humbled that he can work his crazy hours and still find the energy to pick up the pieces I have to let fall because RSD has determined that I could not help clean at all.
About six years ago I had the surgery that ended my career. The surgeon and surgery were not at fault. Simply the numerous surgeries to manage the SCS had left me with chronic back pain. I had found my limit. I could not simply push past the combination of RSD and chronic back pain with the limitations they both force apon me. I stopped working and I stopped driving.
To an independent woman who fought RSD to gain these abilities this felt like a giant leap backwards. But, I had a family to think about. What good was I to them if I pushed my limits every day to work and drive only to then go home and be useless. Sure the money was nice when I was able to work. Driving myself meant I had a strong level of independence. We had a nice joint income. I drove myself to appointments and was able to take Gabe anywhere I wanted to go. When I was able to drive I would visit my sister for a week each summer.
Loosing those abilities was hard. It hits the pride sure but when you suddenly are needing to rely on others it is hard to adjust to. This is where a great support system comes into play again. Leo has always been great and thanks to his flexible hours at work he is often able to accomodate most of my needs. My best friend has been great and would drive for over an hour to come to my house just for a girls day. She also drove me once to Maryland for a long weekend (taking off of work) so I could see my sister after her own back surgery. She has always been great and supportive but even she has her limits, we don't live in the same state so it's not like she can easily jump in her car and be here for me. My parents are the same. They have tried hard to be able to drive to me, rearrange schedules if Leo cannot take me to a doctors appointment, and drive to my house on Sunday's for church. My mother has often taken off of work for a week when I needed surgery to help pick up the slack around the house and take care of my needs. Being 30 years old and relying on your parents help is very humbling. Having a friend who gives more than she receives but is always there for you because she loves you is a blessing. I am blessed to have a great support system.
Still it would be nice to have that Fairy Godmother who could swoop down, wave a wand, abracadabra you have a clean and tidy house. I often think about getting a cleaning service to come in once a week but it would definitly streatch our dollar considering I have a fixed income from Social Security. I love our country, USA is a great place to live but other countries actually give house cleaning services when you are on a disabled status. Makes sense to me, if you are disabled from work how the heck are you supposed to keep up with the housework - sounds to me like a man set up our SSD program because the old fashioned man doesn't think keeping house is the same as a real job. Joke! Do not be offended!!!
With all of that being said. How does an experianced person with RSD manage those days when they simply do not have the energy to accomplish what needs to be done that day? No, we don't push past it and do it all anyway. No, we don't call someone from our support system and beg them to come over and clean our house. We let it slide, let it build up another day and pray that the energy comes back enough for one task at a time. An experienced RSD'er knows that you cannot use energy that simply is not there because you are then asking for a flair. So, you take the energy as it comes and take a it one task at a time. Sometimes it is a small task like folding the blankets on the couch or putting the papers on the table into a neat pile. Other times we will use a sudden burst of energy to plow through the sink stacked high with dishes. Eventually it will all get done and if not then we know our family and friends will understand, they won't judge our imperfect home. That is the only way to manage the lack of energy living with RSD brings to our daily lives.
If you have RSD this scenario probably sounds familiar. This describes many of my days. I had a great nights sleep. I have plans and appointments for the day. I WANT a clean house for when Lucas' therapist arrives or if we have family coming over. I WANT my kitchen clean and dishes put away to make my kitchen feel warm and welcoming. I WANT to make a healthy homemade meal for my family to enjoy at a clean and properly set dinning room table. I WANT to be able to keep bedroom doors open to show off immaculate beds. I WANT the laundry kept up to date with clothes and towels neatly folded and put away. I WANT to be able to do these things. RSD states that my wants are not resonable with what my current state of abilities are.
Sort of sucks doesn't it? Well, you learn how to adjust and lower expectations. You still feel embarresed when a relative stops by for a visit and discreatly washes your dishes and straightens out your dinning room table. You fully appreciate their help because it is not their responsibility to help out. As embarresing as it is there are days I still pray that an Angel will descend from heaven just to help clean up. Saturday's my husband will steamroll the house and quickly straighten it out and clean it up. I will watch silently, humbled that he can work his crazy hours and still find the energy to pick up the pieces I have to let fall because RSD has determined that I could not help clean at all.
About six years ago I had the surgery that ended my career. The surgeon and surgery were not at fault. Simply the numerous surgeries to manage the SCS had left me with chronic back pain. I had found my limit. I could not simply push past the combination of RSD and chronic back pain with the limitations they both force apon me. I stopped working and I stopped driving.
To an independent woman who fought RSD to gain these abilities this felt like a giant leap backwards. But, I had a family to think about. What good was I to them if I pushed my limits every day to work and drive only to then go home and be useless. Sure the money was nice when I was able to work. Driving myself meant I had a strong level of independence. We had a nice joint income. I drove myself to appointments and was able to take Gabe anywhere I wanted to go. When I was able to drive I would visit my sister for a week each summer.
Loosing those abilities was hard. It hits the pride sure but when you suddenly are needing to rely on others it is hard to adjust to. This is where a great support system comes into play again. Leo has always been great and thanks to his flexible hours at work he is often able to accomodate most of my needs. My best friend has been great and would drive for over an hour to come to my house just for a girls day. She also drove me once to Maryland for a long weekend (taking off of work) so I could see my sister after her own back surgery. She has always been great and supportive but even she has her limits, we don't live in the same state so it's not like she can easily jump in her car and be here for me. My parents are the same. They have tried hard to be able to drive to me, rearrange schedules if Leo cannot take me to a doctors appointment, and drive to my house on Sunday's for church. My mother has often taken off of work for a week when I needed surgery to help pick up the slack around the house and take care of my needs. Being 30 years old and relying on your parents help is very humbling. Having a friend who gives more than she receives but is always there for you because she loves you is a blessing. I am blessed to have a great support system.
Still it would be nice to have that Fairy Godmother who could swoop down, wave a wand, abracadabra you have a clean and tidy house. I often think about getting a cleaning service to come in once a week but it would definitly streatch our dollar considering I have a fixed income from Social Security. I love our country, USA is a great place to live but other countries actually give house cleaning services when you are on a disabled status. Makes sense to me, if you are disabled from work how the heck are you supposed to keep up with the housework - sounds to me like a man set up our SSD program because the old fashioned man doesn't think keeping house is the same as a real job. Joke! Do not be offended!!!
With all of that being said. How does an experianced person with RSD manage those days when they simply do not have the energy to accomplish what needs to be done that day? No, we don't push past it and do it all anyway. No, we don't call someone from our support system and beg them to come over and clean our house. We let it slide, let it build up another day and pray that the energy comes back enough for one task at a time. An experienced RSD'er knows that you cannot use energy that simply is not there because you are then asking for a flair. So, you take the energy as it comes and take a it one task at a time. Sometimes it is a small task like folding the blankets on the couch or putting the papers on the table into a neat pile. Other times we will use a sudden burst of energy to plow through the sink stacked high with dishes. Eventually it will all get done and if not then we know our family and friends will understand, they won't judge our imperfect home. That is the only way to manage the lack of energy living with RSD brings to our daily lives.
Thursday, March 21, 2013
Importance of Imagination
Imagination is so important in children. What do you do when your little guy whose speech/language quality can barely be understood starts using their imagination?
When Gabriel was three years old he struggled at nighttime because of the monster in the closet. Every night after I read him his story, sang him a song and said our prayers I would turn off the light and close the door till only an inch of light shown through. Without fail 5 minutes later he would be calling out to us and my husband would have to chase the monsters out of the closet. Months later we found the culprit who was scaring him each night. The cat!
With Lucas everything is different. Most of his words that we understand are his "core" words or are said in context of the moment. Many times during the day we play a guessing game of what he just said. When imaginary plays comes into the conversation we really need to be on top of our game. Like when he grabs his NY Rangers Truck and calls it "Mats" or in the morning he wants a banana for breakfast and says night night as I am peeling it. It takes a while for us to register that he is using his imagination and then to "go along" with what he is saying. "Mats" his NY Rangers truck turned out to be Mack from the movie Cars. I am still trying to figure out what peeling the banana has to do with night night.
I have found that it is so easy to get caught up in the stress of Lucas' speech/language issues. An important part of letting go of that stress is having fun with each new sound, word approximation, and experience. These early years go by so fast in the scope of life but when you compile therapists, IEP meetings, evaluations, and day to day experiences it is so easy to feel like each week is long and short at the same time. Long because you have to get through the hectic daily schedules and short because you never seem to have enough hours get everything accomplished. Fitting in quality play time can be a challenge when you have so much to accomplish in a day. That is why I like being hand's on with his therapy. If I know exactly how to help him I can include those techniques into our play time!
Knowing how to incorporate therapy into such things like playing with playdoh, lego's, trains, and reading. I have learned so much from our EI SLP and I will continue to learn with his new teacher and therapist. Learning to effectively communicate is so important but it is meaningless if it does not carry over into every day life. If I never played Cars with him I would not have understood that "Mats" was really Mack from the movie. One of his favorite Thomas the Train characters is Diesel 10, when learning to call him by his name this was beyond his ability so he used his hand to imitate the claw on top and would then say "en" (ten). Working and playing with him he now attempts to say Diesel 10 and his approximations are slowly coming closer to a stranger understanding him if they know what Diesel 10 is. That is huge progress that is due to my ability to work with him at home.
When Gabriel was three years old he struggled at nighttime because of the monster in the closet. Every night after I read him his story, sang him a song and said our prayers I would turn off the light and close the door till only an inch of light shown through. Without fail 5 minutes later he would be calling out to us and my husband would have to chase the monsters out of the closet. Months later we found the culprit who was scaring him each night. The cat!
With Lucas everything is different. Most of his words that we understand are his "core" words or are said in context of the moment. Many times during the day we play a guessing game of what he just said. When imaginary plays comes into the conversation we really need to be on top of our game. Like when he grabs his NY Rangers Truck and calls it "Mats" or in the morning he wants a banana for breakfast and says night night as I am peeling it. It takes a while for us to register that he is using his imagination and then to "go along" with what he is saying. "Mats" his NY Rangers truck turned out to be Mack from the movie Cars. I am still trying to figure out what peeling the banana has to do with night night.
I have found that it is so easy to get caught up in the stress of Lucas' speech/language issues. An important part of letting go of that stress is having fun with each new sound, word approximation, and experience. These early years go by so fast in the scope of life but when you compile therapists, IEP meetings, evaluations, and day to day experiences it is so easy to feel like each week is long and short at the same time. Long because you have to get through the hectic daily schedules and short because you never seem to have enough hours get everything accomplished. Fitting in quality play time can be a challenge when you have so much to accomplish in a day. That is why I like being hand's on with his therapy. If I know exactly how to help him I can include those techniques into our play time!
Knowing how to incorporate therapy into such things like playing with playdoh, lego's, trains, and reading. I have learned so much from our EI SLP and I will continue to learn with his new teacher and therapist. Learning to effectively communicate is so important but it is meaningless if it does not carry over into every day life. If I never played Cars with him I would not have understood that "Mats" was really Mack from the movie. One of his favorite Thomas the Train characters is Diesel 10, when learning to call him by his name this was beyond his ability so he used his hand to imitate the claw on top and would then say "en" (ten). Working and playing with him he now attempts to say Diesel 10 and his approximations are slowly coming closer to a stranger understanding him if they know what Diesel 10 is. That is huge progress that is due to my ability to work with him at home.
Wednesday, March 20, 2013
God laughs when we make plans ...
I had this week planned out. Enjoy my last sessions with Lucas' EI therapists. Clean the house and spare room. Rest. Make cupcakes for Lucas to take to playschool on Thursday to celebrate his birthday with his classmates. Have a blast on Saturday, Lucas' 3rd Birthday. Well, a sore throat and fever are wrecking these plans. Lucas just had to get sick right before his birthday. Can't this kid ever do anything the easy way?
My energy now must go into taking care of the little guy. Meaning as long as he is home I cannot work on the laundry or our spare room. I had to cancel today's therapy session, our second to last with developmental therapist and tomorrow's last session with his speech therapist. Tomorrow Lucas was supposed to celebrate his birthday in class however that cannot happen because of the fever. A sick Lucas is not a stay in bed all day Lucas. Nope, it is a wrestling match to get medicine down his throat. He is cranky and fussy about what he eats, pulling out the tears to get snacks (comfort) when I put my foot down that he eats the sandwich first. Being sick and under the weather also means his speech is a little worse with more stuttering involved. He needs held when it is time for a nap and he needs held when his energy is drained. He is a mommy's boy and doesn't want to share my arms with anyone. From the moment he is up in the morning I have to be ON and that is hard to do when moving is difficult.
The best I can do is my best. I have to keep pushing through but I know how to cut back making sure I save my energy for where it matters most. Lucas. The dishs can sit another day in the sink. Laundry can be handled later, it has waited this long it can continue to wait. The carpet may need vaccuming but it will wait, no one will be here to notice. I have a meal in the freezer for just this type of occassion, defrost and heat in the oven. As long as I have enough energy to hug Gabe and help him with his homework the rest of my daily energy is dedicated to my little guy.
Crossing my fingers that Lucas get's better quickly, no one else gets sick, my energy holds up and I can accomplish my revised to do list. God must be loving this little joke on me right now!
My energy now must go into taking care of the little guy. Meaning as long as he is home I cannot work on the laundry or our spare room. I had to cancel today's therapy session, our second to last with developmental therapist and tomorrow's last session with his speech therapist. Tomorrow Lucas was supposed to celebrate his birthday in class however that cannot happen because of the fever. A sick Lucas is not a stay in bed all day Lucas. Nope, it is a wrestling match to get medicine down his throat. He is cranky and fussy about what he eats, pulling out the tears to get snacks (comfort) when I put my foot down that he eats the sandwich first. Being sick and under the weather also means his speech is a little worse with more stuttering involved. He needs held when it is time for a nap and he needs held when his energy is drained. He is a mommy's boy and doesn't want to share my arms with anyone. From the moment he is up in the morning I have to be ON and that is hard to do when moving is difficult.
The best I can do is my best. I have to keep pushing through but I know how to cut back making sure I save my energy for where it matters most. Lucas. The dishs can sit another day in the sink. Laundry can be handled later, it has waited this long it can continue to wait. The carpet may need vaccuming but it will wait, no one will be here to notice. I have a meal in the freezer for just this type of occassion, defrost and heat in the oven. As long as I have enough energy to hug Gabe and help him with his homework the rest of my daily energy is dedicated to my little guy.
Crossing my fingers that Lucas get's better quickly, no one else gets sick, my energy holds up and I can accomplish my revised to do list. God must be loving this little joke on me right now!
Saturday, March 16, 2013
Bedtime, rewards, and pain that is worth it.
Bedtime battles
I confess we let Lucas sleep in our bed. December 2011 he figured out how to climb out of his crib or rather he figured out how to climb up on the railing and then fall out of his crib. So in early January 2012 we switched out his crib for a toddler bed. Lucas didn't want to sleep in the new bed and because of my health issues I couldn't reinforce the new bed time routine. As a parent you choose your battles. Lucas claimed the middle of our bed and has been there ever since.
This past month I have been working on getting Lucas to play in his room more. I would hang out in his room with him. Thursday he skipped his nap and fell asleep in my arms. Instead of just plopping him in bed next to me I laid him down in his own room. When he woke up around midnight I laid down next to him but did not hold him close. Within 15 minutes he was sound asleep again so I got up and went back to my own bed. What a glorious feeling to enjoy my own pillow and the full side of my bed!
Last night Lucas wanted to sleep in his own bed. When it was time for bed he walked straight into his room. Lucas wanted me to stay with him. It was still a little early and he was super tired so I said okay to watching a movie while cuddling him. I dozed off a few times but he just wasn't falling asleep yet. When the movie was over I said enough and turned the tv off and held him tight. We both fell asleep. Around 5 am Leo woke and realized I was missing from the bed. As he woke me up to come to bed Lucas woke up and came with us.
Rewards
Even though Lucas needed me to sleep with him I still consider last night a win! Last month he wouldn't have even let us sleep in his bed. He would have screamed and fussed until we let him into our room. I am taking these two victories to mean that we are on the right track.
Then early this morning I was given the sweetest reward for my efforts. Laying in bed Lucas was slowly waking up even though I was hoping to get more shut eye. As we are laying there snuggled up to each other he quietly says "I oo ou" and I just hold him tighter. I Love You. Lucas will be 3 years old next week and this is the first time he has said this without me prompting him.
So worth it!!!
Two nights sleeping in his own bed. I love you. What a sweet reward. All day today I struggled with stiffness. Lucas' bed is not my tempurpedic mattress or pillow. If I need to sleep in his bed a few more days to help ease his transition I will do what I need to do. Especially if there is the possibility of hearing him say "I oo ou" on his own. Talk about making the pain worth it!
I confess we let Lucas sleep in our bed. December 2011 he figured out how to climb out of his crib or rather he figured out how to climb up on the railing and then fall out of his crib. So in early January 2012 we switched out his crib for a toddler bed. Lucas didn't want to sleep in the new bed and because of my health issues I couldn't reinforce the new bed time routine. As a parent you choose your battles. Lucas claimed the middle of our bed and has been there ever since.
This past month I have been working on getting Lucas to play in his room more. I would hang out in his room with him. Thursday he skipped his nap and fell asleep in my arms. Instead of just plopping him in bed next to me I laid him down in his own room. When he woke up around midnight I laid down next to him but did not hold him close. Within 15 minutes he was sound asleep again so I got up and went back to my own bed. What a glorious feeling to enjoy my own pillow and the full side of my bed!
Last night Lucas wanted to sleep in his own bed. When it was time for bed he walked straight into his room. Lucas wanted me to stay with him. It was still a little early and he was super tired so I said okay to watching a movie while cuddling him. I dozed off a few times but he just wasn't falling asleep yet. When the movie was over I said enough and turned the tv off and held him tight. We both fell asleep. Around 5 am Leo woke and realized I was missing from the bed. As he woke me up to come to bed Lucas woke up and came with us.
Rewards
Even though Lucas needed me to sleep with him I still consider last night a win! Last month he wouldn't have even let us sleep in his bed. He would have screamed and fussed until we let him into our room. I am taking these two victories to mean that we are on the right track.
Then early this morning I was given the sweetest reward for my efforts. Laying in bed Lucas was slowly waking up even though I was hoping to get more shut eye. As we are laying there snuggled up to each other he quietly says "I oo ou" and I just hold him tighter. I Love You. Lucas will be 3 years old next week and this is the first time he has said this without me prompting him.
So worth it!!!
Two nights sleeping in his own bed. I love you. What a sweet reward. All day today I struggled with stiffness. Lucas' bed is not my tempurpedic mattress or pillow. If I need to sleep in his bed a few more days to help ease his transition I will do what I need to do. Especially if there is the possibility of hearing him say "I oo ou" on his own. Talk about making the pain worth it!
Friday, March 15, 2013
Pre-K, the end of EI and Gabriel
Hello Pre-K
Yay! Lucas made it into the school districts pre-school program! His first day will be April 2nd. Lucas is excited and keeps asking when he will go to the "beh ool" big school. The program there is great and well rounded. Kids who qualify based on special needs are funded by the state program (gotta love IDEA part B) however they also accept general tuition kiddos. The class is for children ages 3-5 and they have all different abilities. Lucas will be getting one on one speech therapy twice a week for 30 minutes and the therapist also does a group/class session once to twice a week. We already adore the preschool teacher who is a certified in special education, her background is centered in special education children, she also has a general education degree. Talking with her helps ease many of my concerns as she knows exactly what to do with Lucas and is very familiar with children who have speech issues. Can you tell we are excited about this program?
After he starts school I will be able to give a more detailed explanation about the beauties of this program and how it is perfect for Lucas' growth.
Goodbye EI
In saying hello to the big school it is a bitter sweet goodbye to Early Intervention. Next week will be Lucas' last week. I have been emotionally preparing myself for this moment. I have worked side by side with these wonderful women for over a year now. They have been in my home working with Lucas while I recovered from both surgeries. They have given me so much advice on many other areas in my life. I have come to think of them as friends and not simply Lucas' therapists. They have given me comfort, guidence and reassurance that I am doing what is best for both of my children. Beyond everything I can never thank them enough for how much Lucas' has grown this past year.
As a mother we all yearn for the day when our child calls us "Mama" or "Mommy" so when that expected milestone comes after the age of two it holds so much more meaning. For me, that precious word came when I was in bed recovering from surgery last spring and when it was said it was so clear, and filled with so much joy that when he climbed on the bed for my hug I never wanted to let go. When he left the room I cried for the joy of hearing the love in his voice. THAT was the first and most precious gift Early Intervention gave me. It is a memory I will always hold within my heart.
Early Intervention has taught me how to advocate for Lucas and how to set realistic expectations. Developmental has taught me how to play with Lucas and guide him with self help techniques. Speech has shown me how to look for approximations of words and how to help Lucas create a clear sound when it is appropriate. Together they have taught me not to back down when I want something for Lucas but to keep an open mind to the specialist working with him. This can be a delicate balancing act when our expectations do not meet eye to eye.
It has been an inevitable moment that we will say goodbye. From the first day we said hello it was clear that they would be exiting our lives when he turns three. That is simply how the program works, EI is birth till 3 and then the public school system takes over. No matter how mentally prepared I am I know that the moment they walk out more door on that last day I will feel a loss of a great friendship. The best I can do is continue the work we set in place to help Lucas and bond with his new teacher and therapist as best as possible knowing that in time I will have to say good bye once again. The only consistant people who will always be there to help Lucas grow will be his Mommy and Daddy (Gabriel too to an extent).
Take a moment with me to be corny and remember that Boys II Men song "It's so hard to say goodbye to yesterday." I may have to say good bye to these precious women but they have earned a place in my heart for all time.
Gabriel's IEP
I realize I have not focused a post on Gabriel yet. That is because so much has been up in the air for him. Today I have received his initial IEP, made my comments, notes and added on area's that I would like a modification for. When I have a real handle on what is going on with him I will be able to compose a post about what has been going on with him this year.
Yay! Lucas made it into the school districts pre-school program! His first day will be April 2nd. Lucas is excited and keeps asking when he will go to the "beh ool" big school. The program there is great and well rounded. Kids who qualify based on special needs are funded by the state program (gotta love IDEA part B) however they also accept general tuition kiddos. The class is for children ages 3-5 and they have all different abilities. Lucas will be getting one on one speech therapy twice a week for 30 minutes and the therapist also does a group/class session once to twice a week. We already adore the preschool teacher who is a certified in special education, her background is centered in special education children, she also has a general education degree. Talking with her helps ease many of my concerns as she knows exactly what to do with Lucas and is very familiar with children who have speech issues. Can you tell we are excited about this program?
After he starts school I will be able to give a more detailed explanation about the beauties of this program and how it is perfect for Lucas' growth.
Goodbye EI
In saying hello to the big school it is a bitter sweet goodbye to Early Intervention. Next week will be Lucas' last week. I have been emotionally preparing myself for this moment. I have worked side by side with these wonderful women for over a year now. They have been in my home working with Lucas while I recovered from both surgeries. They have given me so much advice on many other areas in my life. I have come to think of them as friends and not simply Lucas' therapists. They have given me comfort, guidence and reassurance that I am doing what is best for both of my children. Beyond everything I can never thank them enough for how much Lucas' has grown this past year.
As a mother we all yearn for the day when our child calls us "Mama" or "Mommy" so when that expected milestone comes after the age of two it holds so much more meaning. For me, that precious word came when I was in bed recovering from surgery last spring and when it was said it was so clear, and filled with so much joy that when he climbed on the bed for my hug I never wanted to let go. When he left the room I cried for the joy of hearing the love in his voice. THAT was the first and most precious gift Early Intervention gave me. It is a memory I will always hold within my heart.
Early Intervention has taught me how to advocate for Lucas and how to set realistic expectations. Developmental has taught me how to play with Lucas and guide him with self help techniques. Speech has shown me how to look for approximations of words and how to help Lucas create a clear sound when it is appropriate. Together they have taught me not to back down when I want something for Lucas but to keep an open mind to the specialist working with him. This can be a delicate balancing act when our expectations do not meet eye to eye.
It has been an inevitable moment that we will say goodbye. From the first day we said hello it was clear that they would be exiting our lives when he turns three. That is simply how the program works, EI is birth till 3 and then the public school system takes over. No matter how mentally prepared I am I know that the moment they walk out more door on that last day I will feel a loss of a great friendship. The best I can do is continue the work we set in place to help Lucas and bond with his new teacher and therapist as best as possible knowing that in time I will have to say good bye once again. The only consistant people who will always be there to help Lucas grow will be his Mommy and Daddy (Gabriel too to an extent).
Take a moment with me to be corny and remember that Boys II Men song "It's so hard to say goodbye to yesterday." I may have to say good bye to these precious women but they have earned a place in my heart for all time.
Gabriel's IEP
I realize I have not focused a post on Gabriel yet. That is because so much has been up in the air for him. Today I have received his initial IEP, made my comments, notes and added on area's that I would like a modification for. When I have a real handle on what is going on with him I will be able to compose a post about what has been going on with him this year.
Tuesday, March 12, 2013
Balancing Act
I haven't posted in over a week. Last week was more of a blur without any significant event causing my slip in posting, but it did give me time to consider new post options. Each day brought a new challenge a new task and by the end of the day I simply forgot to spend time writing about the ins and outs of life with RSD, raising a child with a speech disorder, and everything else that encompasses my life. Basically I had to decide what ball to drop in my balancing act.
A healthy life needs balance. No matter what your personal challenges are you only become truly satisfied when you have an equal balance in your life.
8x3=24 Simple math. There are 24 hours in a day. Our lives are divided into Work, Family, and Rest. 3 basic aspects of life 24 hours in a day means we spend 1/3 of each day (8hours) on each part of our life. Funny how doctors always say we need 8 hours of sleep and this math equals out.
Yes we don't all have this ideal math equation. I know my husband spends about 1/2 his day working, 1/4 playing and 1/4 sleeping. I try my best to help so that he can get more sleep. Many of us sacrifice part of our 1/3 of either family or rest towards work. This leads to burn out, exhaustion, and a feeling of missing out. The good news is that our weekends often let us make up for this lack of balance during the week, but only if you are smart about how you spend your time!
My suggestion is that you figure out a balancing act that works best for you and your life style. Just because family and rest do not get their fair share during the week doesn't mean you cannot make up for it on the weekend. Remember, weekends are your two days off of work so you can now bulk up on the time you miss!
When you have Chronic Pain like RSD and you become disabled you need to pay more attention to your balance. When you are incapable of working your time in that 1/3 doesn't just become more free time. Instead of going to the office each day your job now becomes your health. As logical as this sounds it is very hard to do. It is especially hard when you are still stuck in the grief process.
Figuring out how to spend this time and what the rest of you life will be like is very tricky. Personally speaking I tried to pick up new hobbies to replace activities I could no longer do. Those hobbies never worked out. I spent a lot of time watching tv and reading book after book. Many times I was annoyed when someone would say "I wish I had time to read a whole book." The lack of physical activity and motivation to get out of the house meant I packed on the pounds consequentially feeling negative about my appearance.
I remember that at one point early on in claiming disability I resolved to play video games to help Gabriel because I felt horrible that I couldn't take him outside to play or for a walk anymore. Then when I went to his school for a special Mother's Day event when he was in Kindergarten I was embarressed by the sweet and innocent project where the kids talk about their mothers. Gabriel commented on what his Mommy does all day while he is at school. "My Mommy plays video games and watches tv." The nature of my illness is part of our family normal and Gabriel was too young to understand that Mommy couldn't work or do housework. He actually was bragging about how awesome his Mommy is but the awkward silence and weird looks was enough to make me realize I had to get out of my disability slump!
Today I find balance by putting my health in the forefront but remembering to keep active in all the other aspects of my life. That is what happened last week. Between taking care of myself and my family I didn't have time to sit at the computer and blog about it. My schedule was simply too busy.
A healthy life needs balance. No matter what your personal challenges are you only become truly satisfied when you have an equal balance in your life.
8x3=24 Simple math. There are 24 hours in a day. Our lives are divided into Work, Family, and Rest. 3 basic aspects of life 24 hours in a day means we spend 1/3 of each day (8hours) on each part of our life. Funny how doctors always say we need 8 hours of sleep and this math equals out.
Yes we don't all have this ideal math equation. I know my husband spends about 1/2 his day working, 1/4 playing and 1/4 sleeping. I try my best to help so that he can get more sleep. Many of us sacrifice part of our 1/3 of either family or rest towards work. This leads to burn out, exhaustion, and a feeling of missing out. The good news is that our weekends often let us make up for this lack of balance during the week, but only if you are smart about how you spend your time!
My suggestion is that you figure out a balancing act that works best for you and your life style. Just because family and rest do not get their fair share during the week doesn't mean you cannot make up for it on the weekend. Remember, weekends are your two days off of work so you can now bulk up on the time you miss!
When you have Chronic Pain like RSD and you become disabled you need to pay more attention to your balance. When you are incapable of working your time in that 1/3 doesn't just become more free time. Instead of going to the office each day your job now becomes your health. As logical as this sounds it is very hard to do. It is especially hard when you are still stuck in the grief process.
Figuring out how to spend this time and what the rest of you life will be like is very tricky. Personally speaking I tried to pick up new hobbies to replace activities I could no longer do. Those hobbies never worked out. I spent a lot of time watching tv and reading book after book. Many times I was annoyed when someone would say "I wish I had time to read a whole book." The lack of physical activity and motivation to get out of the house meant I packed on the pounds consequentially feeling negative about my appearance.
I remember that at one point early on in claiming disability I resolved to play video games to help Gabriel because I felt horrible that I couldn't take him outside to play or for a walk anymore. Then when I went to his school for a special Mother's Day event when he was in Kindergarten I was embarressed by the sweet and innocent project where the kids talk about their mothers. Gabriel commented on what his Mommy does all day while he is at school. "My Mommy plays video games and watches tv." The nature of my illness is part of our family normal and Gabriel was too young to understand that Mommy couldn't work or do housework. He actually was bragging about how awesome his Mommy is but the awkward silence and weird looks was enough to make me realize I had to get out of my disability slump!
Today I find balance by putting my health in the forefront but remembering to keep active in all the other aspects of my life. That is what happened last week. Between taking care of myself and my family I didn't have time to sit at the computer and blog about it. My schedule was simply too busy.
Friday, March 1, 2013
RARE DISEASE DAY!!!
Three exlamation points to show the excitement for National Rare Disease Day!!!
This week Gabe had the word 'awkward' in his spelling list. I find it fitting for Rare Disease Day. Many people find it awkward to bring up the conversation about what it is that is plaquing the person in their life that has a health issue that they have never heard of before. It can feel like an awkward topic when you have known this person for most of their life yet you are still confused about what is going on with their health. As someone who has lived with a rare disease it can be awkward when you want to talk about your disease but know that the person is afraid to hear the truth.
A day like today is meant to break down those awkward barriers. It is the conversation opening to say "Hey, is RSD a rare disease? How can that be since it has been around since the Civil War? How are you feeling today?" Yes this can feel very awkward if you have never taken the time before or if the person is new in your life.
I promise you that you will feel awkward at first but at the end of the day you will have made a difference in that persons life. They will feel a little less invisiable and more accepted to know that you cared enough to break through the awkward phase to let them know you care. You will empower them. You will let them know that you believe "Even a rare disease needs a cure!"
http://rarediseaseday.us/
This week Gabe had the word 'awkward' in his spelling list. I find it fitting for Rare Disease Day. Many people find it awkward to bring up the conversation about what it is that is plaquing the person in their life that has a health issue that they have never heard of before. It can feel like an awkward topic when you have known this person for most of their life yet you are still confused about what is going on with their health. As someone who has lived with a rare disease it can be awkward when you want to talk about your disease but know that the person is afraid to hear the truth.
A day like today is meant to break down those awkward barriers. It is the conversation opening to say "Hey, is RSD a rare disease? How can that be since it has been around since the Civil War? How are you feeling today?" Yes this can feel very awkward if you have never taken the time before or if the person is new in your life.
I promise you that you will feel awkward at first but at the end of the day you will have made a difference in that persons life. They will feel a little less invisiable and more accepted to know that you cared enough to break through the awkward phase to let them know you care. You will empower them. You will let them know that you believe "Even a rare disease needs a cure!"
http://rarediseaseday.us/
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