Big update, so here goes. The last few weeks have been really good. I've had way more good days then bad. I did have a few bad days that were really rough, but my good days totally outweighed them. I was able to travel to go see friends in Richmond for a weekend which is about 1 1/2 hour trip. I went to an amusement park where I was able to ride a couple of the easier rides. Symptoms only elevated a little.
I've started exercising, which has made me feel better too. I've been doing low-key type exercises. I'm trying really hard to get back into shape, but can't do my hard core exercises. I've done a lot of research to find styles that will work out the areas that I want to with out pushing too hard to escalate the symptoms of rocking or dizzy feeling. So stretching has been the biggest thing I've been working on. Being a dancer for 15 years, I have always been flexible. Well apparently after doing mostly sitting for a year, you lose that quick, so I'm getting it back. I do some yoga, Pilates, and Tai Chi type movements to help relax my symptoms. This has been my warm up of sorts since I can't do like a warm-up jog. I use free weights, and exercise bands to do tension exercises for my arms and legs. I do a lot of stuff with planks and push up positions to work my abs out. Crunches tend to make the rocking worse for me. Then at the end Lily comes down and we dance to cool down. I alternate my days to make it better for me.
I've also accomplished a lot around my house. I have finished the top level of my house as far as painting and redecorating the space. I was able to also update our floor in our kitchen. The floor nearly killed me, but I pushed through a lot of the tiredness to get it done. I was having friends come over so I needed to get it done quickly. Luckily I have awesome friends who talked to me while I suffered. They made me laugh and find some humor in it.
I had some emotional days this past week too. Life happens, I'm a red-head, I get emotional. Usually the emotional stuff makes my symptoms jump up much higher, but it wasn't as bad as it normally is. I was able to still function and move on to finish my projects.
I'm coming up on one year. My symptoms started on May 28. I was diagnosed on June 5. I found my original post that I wrote on my facebook when friends and family were asking what was wrong. I look back and realize how bad I was at that point, and how far I've come. I feel like my good days are getting really good and there are more of them as time goes on.
I'm testing myself Memorial Day weekend though. I'm heading to South Carolina to see my dad and grandparents. I have been down there in over a year. This will be the longest trip that I've done since I was diagnosed. I'm hoping for the best, ready for the worst. I have faith that it will all work well, and if not, I have my meds and I'll have my family around as well to help. This week I'll be preparing for the trip and it should be pretty relaxing all week since I finished all of my cleaning.
Monday, May 20, 2013
Wednesday, May 8, 2013
"Dirt Road Anthem"~Jason Aldean
Lots to catch up on today.
Even though last week I had a really bad bout of insomnia, but even with that I went from 0-1 on the scale Thursday, Friday, Saturday and even into Sunday. I did another travel weekend, heading to Richmond on Friday night.
We went to Kings Dominion on Saturday with friends and it turned out to be a great day. Very relaxing and the weather couldn't have been more perfect for that park. (There's not a lot of shade so cloudy, cool days are better to go.) The kids had never been so they were excited when we got there. I handled the crowds, weather and even rode a couple rides, that's right, I rode a couple rides! They weren't crazy ones, but I came off of them with little symptoms.
We had an awesome lunch with some dear friends. My son, who is a cub scout, sat with our favorite big guy Wachichu and made a Native American beaded choker so he could show his den. I was even able to concentrate long enough to make myself one. I was very proud of myself.
I didn't realize how tired I was until I got into the car to come home. I made it out of Richmond about 10 minutes before I crashed. I slept the rest of the way home and then when I got home.
After some long hours of sleep the last couple of days, I'm starting to feel a bit back to my normal again which is good.My ear pressure has been pretty bad the last couple of days, so I've been coping with that. Because of the increased pressure a lot of the rocking has come back which sucks, but I'm bound and determined to work through it. Unfortunately its made it to where I haven't been able to do my workout routine the last two days, so I'm going to get back on track with that. Today is also Wednesday which is my grocery shopping day so I need to get myself mentally prepared for that.
Its tough with this syndrome to go from really good days to bad, from one type of symptom you are feeling to one you've never had before. Its difficult to adjust constantly. It gets tiring and you just wanted to be your "old" self. But alas, you get this new and not so improved you and you just push forward, because there is nothing else you can do. There was a post on our support group site of comments people always give us that drive us crazy to hear. As I was reading them, I started to laugh because a lot of them are ones I hear from everyone around me whether loved ones or complete strangers. I know most people say these comments out of love or concern, or just plain curiosity. But on my bad days when I don't have the patience to sit and explain, I almost want to have an app on my phone that answers for me. You know one of those diagrams that start out with a question in a box then there are the answers with arrows ... yes or no...and you follow the arrows down until you get to the solution. Its practically an invisible syndrome. There are no physical attributes to it except with your movement such as walking, standing up, squatting down, falling over. Basically you look like an enormous klutz. There is nothing to outwardly show that you have anything wrong with you. My grandfather likes to always point out that "It's hard to remember she's even sick until you see her walk crooked." The main reason for that is, I don't always talk about it. I don't want to always say how I'm feeling or how my symptoms are. It gets me down. So I try to stay upbeat. I continue on with normal life duties as much as possible. I push through my higher symptom days the best way I know how.
Don't get me wrong. I like to teach and inform people of what it is. I don't mind explaining what is happening to me the best way that I can explain it. When people ask me now how I'm feeling, I pretty much say "its a bad day" or "its a good day" or "today i'm just trying to relax" because thats what i do on the worst days, I take it easy and don't push. The best part that I've come to realize is that I've noticed how lucky I am with my support system and those in my life who are okay to accept my short answers. Some days you just don't want to explain and you just want to be in your own world with it and that's okay too.
Even though last week I had a really bad bout of insomnia, but even with that I went from 0-1 on the scale Thursday, Friday, Saturday and even into Sunday. I did another travel weekend, heading to Richmond on Friday night.
We went to Kings Dominion on Saturday with friends and it turned out to be a great day. Very relaxing and the weather couldn't have been more perfect for that park. (There's not a lot of shade so cloudy, cool days are better to go.) The kids had never been so they were excited when we got there. I handled the crowds, weather and even rode a couple rides, that's right, I rode a couple rides! They weren't crazy ones, but I came off of them with little symptoms.
We had an awesome lunch with some dear friends. My son, who is a cub scout, sat with our favorite big guy Wachichu and made a Native American beaded choker so he could show his den. I was even able to concentrate long enough to make myself one. I was very proud of myself.
I didn't realize how tired I was until I got into the car to come home. I made it out of Richmond about 10 minutes before I crashed. I slept the rest of the way home and then when I got home.
After some long hours of sleep the last couple of days, I'm starting to feel a bit back to my normal again which is good.My ear pressure has been pretty bad the last couple of days, so I've been coping with that. Because of the increased pressure a lot of the rocking has come back which sucks, but I'm bound and determined to work through it. Unfortunately its made it to where I haven't been able to do my workout routine the last two days, so I'm going to get back on track with that. Today is also Wednesday which is my grocery shopping day so I need to get myself mentally prepared for that.
Its tough with this syndrome to go from really good days to bad, from one type of symptom you are feeling to one you've never had before. Its difficult to adjust constantly. It gets tiring and you just wanted to be your "old" self. But alas, you get this new and not so improved you and you just push forward, because there is nothing else you can do. There was a post on our support group site of comments people always give us that drive us crazy to hear. As I was reading them, I started to laugh because a lot of them are ones I hear from everyone around me whether loved ones or complete strangers. I know most people say these comments out of love or concern, or just plain curiosity. But on my bad days when I don't have the patience to sit and explain, I almost want to have an app on my phone that answers for me. You know one of those diagrams that start out with a question in a box then there are the answers with arrows ... yes or no...and you follow the arrows down until you get to the solution. Its practically an invisible syndrome. There are no physical attributes to it except with your movement such as walking, standing up, squatting down, falling over. Basically you look like an enormous klutz. There is nothing to outwardly show that you have anything wrong with you. My grandfather likes to always point out that "It's hard to remember she's even sick until you see her walk crooked." The main reason for that is, I don't always talk about it. I don't want to always say how I'm feeling or how my symptoms are. It gets me down. So I try to stay upbeat. I continue on with normal life duties as much as possible. I push through my higher symptom days the best way I know how.
Don't get me wrong. I like to teach and inform people of what it is. I don't mind explaining what is happening to me the best way that I can explain it. When people ask me now how I'm feeling, I pretty much say "its a bad day" or "its a good day" or "today i'm just trying to relax" because thats what i do on the worst days, I take it easy and don't push. The best part that I've come to realize is that I've noticed how lucky I am with my support system and those in my life who are okay to accept my short answers. Some days you just don't want to explain and you just want to be in your own world with it and that's okay too.
Monday, April 29, 2013
"Freak Like Me"~Halestorm
It has been a crazy weekend, but I set my goals and I accomplished them. Well most of them. Our drill broke so I'm going to have to wait on the new blinds going up, but the rest is done. I completely cleared out my office, got it repainted and reorganized. Its set up so the kids can get in there to play on the computers, play games, do crafts and its a great distraction-free zone for Seth to do his homework.
This week I want to get my hallway finished and stairwell and then I'll be done with the top portion of my house. Then onto the next level which is the beast of the house. Its a great room w/ cathedral ceilings...definitely going to have to call in help for that since I am not a fan of ladders anymore and I can't look up for long periods of time.
I'm also excited because I found a bunch of exercises that I can work on here at home so that I can start a new workout routine that won't throw me off too much. I've tried a few of them with ease. I've noticed if I do the exercises in bare feet works better because I can adjust my balance better than when I'm in shoes.
I look back at old posts and realize that I've come leaps and bounds from where I started almost one year ago. Its been a constant uphill climb figuring out how to move forward with this. I gave up on so much last year, and I want it back. One step at a time I've been able to to do this. I've had a ton of encouragement from everyone who surrounds me which helps. Am I all the way back to where I was, of course not, but I'm getting there. My good days are my favorite because I feel like I can do so much, like this weekend. I went to bed last night with every muscle in my body hurting from working in the office, but it was a good hurt and I loved it.
I woke in the middle of the night from pressure from the current storm coming in, but I've still gotten up this morning. I've worked on some computer things, and now I'm off to start working on getting the hallway done. I'm working through the pressure because I'm determined to get this done. So I'll paint slower, I'll have to take breaks, but it will be done and I'll feel so much better.
Taking one day at a time, looking around my home and feeling like I'm accomplishing something. It is the best thing in the world.
This week I want to get my hallway finished and stairwell and then I'll be done with the top portion of my house. Then onto the next level which is the beast of the house. Its a great room w/ cathedral ceilings...definitely going to have to call in help for that since I am not a fan of ladders anymore and I can't look up for long periods of time.
I'm also excited because I found a bunch of exercises that I can work on here at home so that I can start a new workout routine that won't throw me off too much. I've tried a few of them with ease. I've noticed if I do the exercises in bare feet works better because I can adjust my balance better than when I'm in shoes.
I look back at old posts and realize that I've come leaps and bounds from where I started almost one year ago. Its been a constant uphill climb figuring out how to move forward with this. I gave up on so much last year, and I want it back. One step at a time I've been able to to do this. I've had a ton of encouragement from everyone who surrounds me which helps. Am I all the way back to where I was, of course not, but I'm getting there. My good days are my favorite because I feel like I can do so much, like this weekend. I went to bed last night with every muscle in my body hurting from working in the office, but it was a good hurt and I loved it.
I woke in the middle of the night from pressure from the current storm coming in, but I've still gotten up this morning. I've worked on some computer things, and now I'm off to start working on getting the hallway done. I'm working through the pressure because I'm determined to get this done. So I'll paint slower, I'll have to take breaks, but it will be done and I'll feel so much better.
Taking one day at a time, looking around my home and feeling like I'm accomplishing something. It is the best thing in the world.
Friday, April 26, 2013
"No More Tears"~Ozzy Osbourne
Cleaning and Ozzy? Yes, please. Nothing beats older rock music when you are cleaning. I've been on a mission to spring clean my entire house. Its taking time which I expected as does anything I do nowadays, but its getting done. I've gotten our office organized, cleared out our main closet and emptied out old meds from the cabinet. I determined to get rid of stuff that we no longer need/use. We don't have a lot of storage space, so what we have, I'm bound to use wisely.
We bought our house 5 years ago. Closed on it a week after Lily was born. I wanted this neighborhood because this is where my grandfather lives and its a very quiet area. We are in a neighborhood where you get to know the people who are around you. We knew it would need some cosmetic work, so we've been working little by little to paint rooms, remove carpets, lay down new flooring, etc. while being on a budget. It has been slow going, but we are doing it. I'm finally starting to have a few good days of low symptoms so I'm hoping to get painting some this weekend. My goal is to get our office and upstairs hallway painted. I want to get new curtains for the office and my daughter's room, and then we'll be done with up stairs for now. I also want to get my stairwells painted. That's going to be fun let me tell ya! Throwing a girl on a constant boat to paint back & forth while on steps. Once we finish our living/dining room area I can get rid of my ugly carpet and have hardwood floors all throughout my house and that I'm excited about.
When you have to work around the good & bad days, it makes housework that much more daunting. I like cleaning and having everything in its place. Since I was diagnosed I get anxious when things aren't where they should be. I've decided my best bet is to tackle my house in sections, so I'm going to finish my upstairs which is the kids area and office. Then the main living space and then the lower level which is becoming the master suite is going to take the longest, so that will be last. These projects are on top of my normal housework and having three kids running around a daily basis is going to make it that much more fun to do.
On my good days like today where I'm pushing through and feeling good, I feel better about the tasks as hand and its going to feel good when the rooms start coming together more. This is the part I like of owning my own home.
Well back off to work. Here comes "Crazy Train."
We bought our house 5 years ago. Closed on it a week after Lily was born. I wanted this neighborhood because this is where my grandfather lives and its a very quiet area. We are in a neighborhood where you get to know the people who are around you. We knew it would need some cosmetic work, so we've been working little by little to paint rooms, remove carpets, lay down new flooring, etc. while being on a budget. It has been slow going, but we are doing it. I'm finally starting to have a few good days of low symptoms so I'm hoping to get painting some this weekend. My goal is to get our office and upstairs hallway painted. I want to get new curtains for the office and my daughter's room, and then we'll be done with up stairs for now. I also want to get my stairwells painted. That's going to be fun let me tell ya! Throwing a girl on a constant boat to paint back & forth while on steps. Once we finish our living/dining room area I can get rid of my ugly carpet and have hardwood floors all throughout my house and that I'm excited about.
When you have to work around the good & bad days, it makes housework that much more daunting. I like cleaning and having everything in its place. Since I was diagnosed I get anxious when things aren't where they should be. I've decided my best bet is to tackle my house in sections, so I'm going to finish my upstairs which is the kids area and office. Then the main living space and then the lower level which is becoming the master suite is going to take the longest, so that will be last. These projects are on top of my normal housework and having three kids running around a daily basis is going to make it that much more fun to do.
On my good days like today where I'm pushing through and feeling good, I feel better about the tasks as hand and its going to feel good when the rooms start coming together more. This is the part I like of owning my own home.
Well back off to work. Here comes "Crazy Train."
Wednesday, April 24, 2013
"Sexy Back"~Justin Timberlake
What a gorgeous friggin day! I woke up and felt my "normal"!!! Can I just say how excited I am to be able to move around my house fairly normally. This is amazing! After almost 6 full days of getting my butt kicked, I am good!
So what to do on a gorgeous day like this? Well I go grocery shopping of course! I went today because of some good deals and ended up saving almost 75% on groceries. Heck yea! And that's with a 5 year old asking questions and a 2 year old deciding that everything you put in the cart should then be thrown at your head.
Got home, put everything away and now my daughter is outside playing while my niece is napping, going on 3 hours nap. I've been able to get laundry done and started working on my kitchen and dining rooms.
I have so much energy its crazy. I feel like my hyper, giddy self...so watch out! haha
Helps that outside its gorgeous and every time I look out to check on my daughter all you see is sunshine. A beautiful spring breeze moving all of the trees. Its beautiful.
I feel good inside and out today and that is a definite plus from how I've been feeling. I have to push through those horrible bad days to be able to enjoy days like today. I'm all smiles. I'm laughing. I'm taking things easy. I'm shaking it around my house to JT, and life is amazing :-)
So what to do on a gorgeous day like this? Well I go grocery shopping of course! I went today because of some good deals and ended up saving almost 75% on groceries. Heck yea! And that's with a 5 year old asking questions and a 2 year old deciding that everything you put in the cart should then be thrown at your head.
Got home, put everything away and now my daughter is outside playing while my niece is napping, going on 3 hours nap. I've been able to get laundry done and started working on my kitchen and dining rooms.
I have so much energy its crazy. I feel like my hyper, giddy self...so watch out! haha
Helps that outside its gorgeous and every time I look out to check on my daughter all you see is sunshine. A beautiful spring breeze moving all of the trees. Its beautiful.
I feel good inside and out today and that is a definite plus from how I've been feeling. I have to push through those horrible bad days to be able to enjoy days like today. I'm all smiles. I'm laughing. I'm taking things easy. I'm shaking it around my house to JT, and life is amazing :-)
Tuesday, April 23, 2013
"Song to Sing"~Hanson
So today's going to be short and sweet. I started this list for my sister-in-law. A playlist of songs to make you feel better about you. A way for you to feel good about you and your life.
Like me, she suffers from a chronic issue. She has RSD, which basically in layman's terms, her legs feel like they are on fire constantly. It causes extreme pain that even the slightest touch is excruciating. No cure for it, you just have to deal with it. There are meds you hate to take for it that you don't want to take, and again they are all pain meds so it only takes care of the symptoms, but brings on more symptoms in return. It can be depressing just like MdDS, because you basically feel trapped in a body you just don't want anymore. It can take over your life if you let it. But, we aren't going to let that happen. We are going to be as positive we can.
I made this playlist for her so she can get in a positive state of mind, but I thought I would share it. Some of the songs are about being positive, some are about pushing through obstacles we have to face on a daily basis. They work for me, and there are a ton that I listen to, but here are my top 10:
1. Anna Nalick-Shine
2. Bon Jovi-It's My Life
3. Bob Marley-Three Little Birds
4. Sister Hazel-Change Your Mind (I've posted this one before, but its a goodie)
5. U2-Beautiful Day
6. Francesca Battistelli-I'm Letting Go
7. Idina Menzel & Christina Chenowith w/ the cast of Wicked-Defying Gravity
8. Dave Matthews Band-Mercy
9. Garth Brooks-Standing Outside The Fire
10. David Guetta ft. Sia-Titanium
**All rights reserved on all videos**
Like me, she suffers from a chronic issue. She has RSD, which basically in layman's terms, her legs feel like they are on fire constantly. It causes extreme pain that even the slightest touch is excruciating. No cure for it, you just have to deal with it. There are meds you hate to take for it that you don't want to take, and again they are all pain meds so it only takes care of the symptoms, but brings on more symptoms in return. It can be depressing just like MdDS, because you basically feel trapped in a body you just don't want anymore. It can take over your life if you let it. But, we aren't going to let that happen. We are going to be as positive we can.
I made this playlist for her so she can get in a positive state of mind, but I thought I would share it. Some of the songs are about being positive, some are about pushing through obstacles we have to face on a daily basis. They work for me, and there are a ton that I listen to, but here are my top 10:
1. Anna Nalick-Shine
8. Dave Matthews Band-Mercy
**All rights reserved on all videos**
"Higher Ground"~Red Hot Chili Peppers
While talking to my buddy the other day, I realized he's coming up on it one year wedding anniversary, which means I'm coming up on my one year of having MdDS. I found a note I made on Facebook about a week or so after I was diagnosed. I had completely forgotten how bad that week had been. I would have thought that I would never forget, but even as bad as my bad days get, they aren't comparable to that first week or so.
Looking back at my very first post I had here, it shows how far I've come. No, I'm still not working, or driving, but I am able to move freely around my home. I walk to get my son to and from school, I cook on my better days, I can take care of my kids, and I've mastered most household chores. I've learned my limits. I don't push myself too hard.
Yes I still struggle. Just yesterday I took a normal shower. Not too long, just enough to get and get out and I felt like someone beat the heck out of me. Something that I enjoy, taken away, but you learn to live with it.
I hate having to push through everything. I want it to come naturally again. I want to be able to get up without having to think where my feet are and where they are going. I hate having to watch for the unknown. Its hard to explain, but I have to focus literally on everything. Where I am, where others are, where objects are and how everything moves. It is almost like you are in your own chess game. If you make this move then what happens next. Its exhausting. But you do it, because you have to survive.
I just want a day, just one. One day of a real normal. To be able to get in my car, roll down the windows and drive down the interstate with music blaring. To drive to the beach and board with my brother. To go shopping with my sister without any anxiety. To ride a roller coaster with my mom. To go on a trip just me and my husband back to the mountains without any repercussions. To push my daughter and niece on a swing without feeling dizzy. To teach my kids to swim as I was taught. To just be me and who I've always been.
I'm better than I was, but I still have a journey to continue. I'm still working that uphill climb, but one day I'll get to the top.
Looking back at my very first post I had here, it shows how far I've come. No, I'm still not working, or driving, but I am able to move freely around my home. I walk to get my son to and from school, I cook on my better days, I can take care of my kids, and I've mastered most household chores. I've learned my limits. I don't push myself too hard.
Yes I still struggle. Just yesterday I took a normal shower. Not too long, just enough to get and get out and I felt like someone beat the heck out of me. Something that I enjoy, taken away, but you learn to live with it.
I hate having to push through everything. I want it to come naturally again. I want to be able to get up without having to think where my feet are and where they are going. I hate having to watch for the unknown. Its hard to explain, but I have to focus literally on everything. Where I am, where others are, where objects are and how everything moves. It is almost like you are in your own chess game. If you make this move then what happens next. Its exhausting. But you do it, because you have to survive.
I just want a day, just one. One day of a real normal. To be able to get in my car, roll down the windows and drive down the interstate with music blaring. To drive to the beach and board with my brother. To go shopping with my sister without any anxiety. To ride a roller coaster with my mom. To go on a trip just me and my husband back to the mountains without any repercussions. To push my daughter and niece on a swing without feeling dizzy. To teach my kids to swim as I was taught. To just be me and who I've always been.
I'm better than I was, but I still have a journey to continue. I'm still working that uphill climb, but one day I'll get to the top.
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