Song choice came from me and my sis rocking this song out on our trip back from South Carolina. Also seemed pretty appropriate for the way that today's post is going.
I survived the trip. I did pretty well going down. I traveled with Josh and my kids, my sis and her little 2 year old and my mom. We went to visit my dad and grandparents. I used to try to get down there once a year, but didn't get down last year because of being diagnosed. I miss my family down there and enjoy every visit while I'm there.
We traveled really late Friday night and arrived in Spartanburg at about 6:00 in the morning. We stayed the weekend and drove back on Monday. The trip is about a 6 1/2-7 hour trip. I was doing good until about 2 hours left of the trip I started feeling it. The rocking, the headache, the nausea. But I tried to not think about that, and pushed my concentration on singing and dancing around with my sister and being goofy.
The trip down I took all of my meds that I have which consisted of a Transderm scope patch, Valium, Meclizine and Phenerghan. The trip back I didn't have a patch on and I couldn't take my Valium because that's only for night time. I still did really well. I was very tired that night and into the next morning but I was expecting that. Besides, most people feel that way after a trip like that, so it was no surprise.
I was worried about waking up Tuesday and feeling symptoms, however, I actually felt pretty good. I felt like my "normal." I still have my rocking and swaying, but I can deal with it. I felt great about myself being able to push through the chaos of a long distance trip in such a short period of time.
Yesterday was officially one year since I started having symptoms. One year of continuous rocking and swaying. My world literally shifting and moving, when I'm standing still. I've had friends go on trips and come off of boats or planes and feeling a tiny bit of what I have felt every day. For anyone to feel this for even an hour is too long.
I've been having way more good than bad days and I'm hoping that this is a sign of a remission coming soon. Even if I have to deal with the little amount of rocking that I have I could handle that. Fingers are crossed that I continue to feel better.
Wednesday, May 29, 2013
Friday, May 24, 2013
"Get Out of This Town"~Carrie Underwood
This time last year I was preparing to go see my bestfriend get married in Pennsylvania. He wed his beautiful wife on May 26th and I drove home May 27th. The next morning my world was completely different. Here is what I wrote one year ago on facebook to notify friends and family what had been going on for a week:
"Everyone has been sending me messages about whats going on so here goes:I've been feeling like I've been on a boat for the last 1 1/2 weeks. It makes me not able to walk around without help or support. I can't stand or sit up to much or it comes back. If the dizziness stays while i try to walk or sit up I will pass out. Last week the first doctor said i just had a virus that was Wednesday and gave me meds to help with the dizziness and nausea..well that only put me to sleep for hours and didn't help. By Saturday morning I couldn't move my lower half without having excruciating pain. All of my joints hurt, so this time we went to the ER. They started me on a IV fluids and gave me zofron to help with the nausea and took a bunch of blood work and ran an EKG to check my circulation. They sent me home with zofron and patches to put behind my ear to help with the dizziness. They said I was just very dehydrated from being sick earlier in the week. I started feeling normal again when I got home, but I did what the docs said and took it easy. On Sunday I started to feel the symptoms start coming back but not as hard as they were. I woke Monday feeling like I would try to go to work. I got up and dressed and took Seth to school. On my way home, which is only a few blocks away) I started to feel like the I was going to black out. I got Josh on the phone to talk to me to make sure i made it home again safely, and when I reached my drive way I did end up blacking out Lily was there to talk me back. It was the scariest moment in my life because at this point it is my kids are in danger of what is going on with me. I had my mom take me to the ER again. They gave me more fluids and pain meds for my joint pain. They ran another EKG, MRI, CAT Scan and more blood work. Everything came back fine. They did send of blood work to check for Lyme Disease which I won't get those back. They then diagnosed me with Vertigo and gave me a bunch of new meds. Its now Thursday and I still feel like on a boat. Yesterday I know for sure I passed out at least 2 times, however I tend to pass out and not know that I do. The meds are making my eyes dry really bad so I can't wear my contacts because they are making my eyes irritating. It also makes my vision so blurry at moments that I can't see my phone for texts but that comes and goes. The pain is gone for the most part, but I walk around like I'm a drunk and can't do normal things like taking a shower, my strength is very weak and I become very shaking when trying to focus on doing a any tasks, even something so easy as pouring a drink. I'm not allowed to drive anymore and I've been pulled out of work.
Today I"m going to see my ENT doc Dr. Dorofi to see if he can give me some answers because just from our phone call the other day he doesn't think its Vertigo with the symptoms I'm having.
Josh has been my rock through all this. Literally catching me as I fall, holding my had for lab work, and helping me without making me feel like I'm losing all control. My mom and brother have been there to help to keep my spirits up by helping me laugh through all of this and helping drive me places. And for all the texts and messages here on FB I thank you because it has been helping as well. I'll keep everyone up to date as to what is going on. I'm sorry to those I haven't called in awhile or sent messages to, but its been very hard to do. Even typing all of this has been very hard to do. So thank you again for patience, thoughts and prayers. You all have really lifted up my spirits through this very frustrating time. Its been very hard not to fall into a depression state with all of this, but you all have helped me pull through."
Wow, how much a year has changed. I'm still dealing with my symptoms, but I've been having more good than bad days, which is awesome. I'm pushing through and moving forward trying to reclaim my life. I have really awesome friends and a wonderful family who have been there every step of the way.
Now, one year later, I'm heading out on my biggest trip since I was diagnosed. I'm heading to SC to see my grandparents and dad. Its been well over a year since I have them and I've missed them a lot. I'm excited but nervous with traveling. I'm pulling at my faith to get me through this weekend. I'm going to be pushing myself the hardest that I have in over a year. I can't wait to get on the road tonight. Who knows? A trip like this could be what pushes me back to 100% normal. Fingers and toes are crossed that I don't regress and I can come out of this trip at least feeling how I feel now. Here's to safe travels :-)
"Everyone has been sending me messages about whats going on so here goes:I've been feeling like I've been on a boat for the last 1 1/2 weeks. It makes me not able to walk around without help or support. I can't stand or sit up to much or it comes back. If the dizziness stays while i try to walk or sit up I will pass out. Last week the first doctor said i just had a virus that was Wednesday and gave me meds to help with the dizziness and nausea..well that only put me to sleep for hours and didn't help. By Saturday morning I couldn't move my lower half without having excruciating pain. All of my joints hurt, so this time we went to the ER. They started me on a IV fluids and gave me zofron to help with the nausea and took a bunch of blood work and ran an EKG to check my circulation. They sent me home with zofron and patches to put behind my ear to help with the dizziness. They said I was just very dehydrated from being sick earlier in the week. I started feeling normal again when I got home, but I did what the docs said and took it easy. On Sunday I started to feel the symptoms start coming back but not as hard as they were. I woke Monday feeling like I would try to go to work. I got up and dressed and took Seth to school. On my way home, which is only a few blocks away) I started to feel like the I was going to black out. I got Josh on the phone to talk to me to make sure i made it home again safely, and when I reached my drive way I did end up blacking out Lily was there to talk me back. It was the scariest moment in my life because at this point it is my kids are in danger of what is going on with me. I had my mom take me to the ER again. They gave me more fluids and pain meds for my joint pain. They ran another EKG, MRI, CAT Scan and more blood work. Everything came back fine. They did send of blood work to check for Lyme Disease which I won't get those back. They then diagnosed me with Vertigo and gave me a bunch of new meds. Its now Thursday and I still feel like on a boat. Yesterday I know for sure I passed out at least 2 times, however I tend to pass out and not know that I do. The meds are making my eyes dry really bad so I can't wear my contacts because they are making my eyes irritating. It also makes my vision so blurry at moments that I can't see my phone for texts but that comes and goes. The pain is gone for the most part, but I walk around like I'm a drunk and can't do normal things like taking a shower, my strength is very weak and I become very shaking when trying to focus on doing a any tasks, even something so easy as pouring a drink. I'm not allowed to drive anymore and I've been pulled out of work.
Today I"m going to see my ENT doc Dr. Dorofi to see if he can give me some answers because just from our phone call the other day he doesn't think its Vertigo with the symptoms I'm having.
Josh has been my rock through all this. Literally catching me as I fall, holding my had for lab work, and helping me without making me feel like I'm losing all control. My mom and brother have been there to help to keep my spirits up by helping me laugh through all of this and helping drive me places. And for all the texts and messages here on FB I thank you because it has been helping as well. I'll keep everyone up to date as to what is going on. I'm sorry to those I haven't called in awhile or sent messages to, but its been very hard to do. Even typing all of this has been very hard to do. So thank you again for patience, thoughts and prayers. You all have really lifted up my spirits through this very frustrating time. Its been very hard not to fall into a depression state with all of this, but you all have helped me pull through."
Wow, how much a year has changed. I'm still dealing with my symptoms, but I've been having more good than bad days, which is awesome. I'm pushing through and moving forward trying to reclaim my life. I have really awesome friends and a wonderful family who have been there every step of the way.
Now, one year later, I'm heading out on my biggest trip since I was diagnosed. I'm heading to SC to see my grandparents and dad. Its been well over a year since I have them and I've missed them a lot. I'm excited but nervous with traveling. I'm pulling at my faith to get me through this weekend. I'm going to be pushing myself the hardest that I have in over a year. I can't wait to get on the road tonight. Who knows? A trip like this could be what pushes me back to 100% normal. Fingers and toes are crossed that I don't regress and I can come out of this trip at least feeling how I feel now. Here's to safe travels :-)
Monday, May 20, 2013
"Kiss Tomorrow Goodbye"~Luke Bryan
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.
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.
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.
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