Genetically Defective Collagen at work.
Good ol' EDS: Freakishly Amazing ;)
"Don't be a drag, just be a(n) [EDS] queen."
Saturday, May 28, 2011
Five For Friday 5/28/11
I know, I know, I am late...My excuse is I have been in Georgia, got home yesterday, and had enough energy left to watch the Modern Family finale, and pass out on the couch. After a full night's sleep, I am moving slow, but back in action.
1. Medical Stuff:
2. We went to a wedding Saturday in Northville to celebrate the marriage of Keith and Julie. Keith's family and Brad's family grew up together. It was also Brad's Mom's birthday. Everyone sang to her at the reception, and the bride and groom even gave her, her own cake.
1. Medical Stuff:
- 1 day of PT
- 2 Days of Home Rehab
- Monthly appointment with Larry.
- Was given a prescription for waist high compression stockings.
2. We went to a wedding Saturday in Northville to celebrate the marriage of Keith and Julie. Keith's family and Brad's family grew up together. It was also Brad's Mom's birthday. Everyone sang to her at the reception, and the bride and groom even gave her, her own cake.
Dad "J" and Mom "J" (the birthday girl!)
Brad, me, Dad "J"
Audrey, Chris, me, Brad
Aud and me
Brad and Yoda; 2 Peas in a Pod. The reception had a Star Wars theme.
3. My Aunt Mada sent me this video of my cousin's school in Cincinnati, working together to build a huge Rube Goldberg machine. The art teacher led all the classes in the construction, and this is the film of the project. It is way too cool not to share.
4. With Ehlers-Danlos Awareness month coming to a close, I wanted to share the four Ehlers- Danlos National Foundation Public Service Announcements. It is important that I work hard to make EDS Awareness a year-round event rather than a monthly event.
PSA 1
PSA 2
PSA 3
PSA 4
5. I spent most of the week in beautiful, sunny, Georgia! I am so thankful I had the opportunity to travel to Georgia with my parents to watch my brother graduate from Basic Training at Fort Benning. More on the trip coming soon...
Specialist Andrew John Dama on Family Day
Graduated!
Monday, May 23, 2011
Energy Smarts
I had my monthly Larry appointment today. At my April appointment, Larry graded my Apollo 13 homework assignment he had given me after I spent my March appointment with him in serious meltdown mode tears about life in general. After I received my A++, Larry gave me another assignment, which was due today. My assignment was to show some kind of scale that represented things I COULD do on a 0%, 25%, 50%, 75%, and 100% energy day.
This assignment was meant to help me reframe my thoughts. So instead of getting upset and saying something like, "Oh my goodness, it's a 25% energy day and I can't dust the house," I could instead look at it as, "It may be a 25% energy day but I CAN do a load of laundry, some floor exercises, and post on my blog."
Thankfully, Larry is always there to help me refocus my energy into positive energy, which just so happens to be the premise of this whole exercise.
For the assignment, I decided I wanted to do an energy meter to represent my energy levels throughout a given day. As I showed it to him, I explained that the energy levels and fatigue I experience often fluctuate throughout the day. For example, today I started off at the 50-75% level. Then I went to therapy, and after an hour and a half, I was in the 0-25% range so I knew I had to rest and recover to combat the fatigue, so I could replenish some energy and function to do "the basics" in the afternoon and evening. Again, we talked a lot about goals, and that one of my main goals is to find strategies that help keep me in the 50-100% range the majority of the time. As I type, I am not sure if this is making sense to anyone reading this, but since I am living it, it makes a lot of sense to me.
So, this is what I came up with...
I put a "brad" in the arrow so I could move it around to show what energy zone I am in for the moment. I found two quotes, which I thought were very fitting for the assignment and for my day to day life, which I added to the bottom of the poster.
"You've done it before, and you can do it now. See the positive possibilities. Redirect the substantial energy of your frustration and turn it into positive, effective, unstoppable determination."
~Marston
and...
"Goals provide the energy source that powers our lives. One of the best ways we can get the most from the energy we have is to focus it. That is what goals can do for us; concentrate our energy.
~Waitley
For the rest of my appointment we went over everything else; my new meds, my progress the last month, my upcoming appointments, therapy...Larry also put my mischievous bottom left two ribs back into place and wrote me a prescription for waist-high (instead of thigh-high) compression stockings. Oh, joy. (Note sarcasm)...In Toledo, Dr. Karabin, said that waist-high stockings would be more effective because when the blood pools, a lot of it pools in the abdomen.
As always, it was a very productive and meaningful appointment; both for my mental state and my physical state. And yes, I have another assignment that is due in June :)
This assignment was meant to help me reframe my thoughts. So instead of getting upset and saying something like, "Oh my goodness, it's a 25% energy day and I can't dust the house," I could instead look at it as, "It may be a 25% energy day but I CAN do a load of laundry, some floor exercises, and post on my blog."
Thankfully, Larry is always there to help me refocus my energy into positive energy, which just so happens to be the premise of this whole exercise.
For the assignment, I decided I wanted to do an energy meter to represent my energy levels throughout a given day. As I showed it to him, I explained that the energy levels and fatigue I experience often fluctuate throughout the day. For example, today I started off at the 50-75% level. Then I went to therapy, and after an hour and a half, I was in the 0-25% range so I knew I had to rest and recover to combat the fatigue, so I could replenish some energy and function to do "the basics" in the afternoon and evening. Again, we talked a lot about goals, and that one of my main goals is to find strategies that help keep me in the 50-100% range the majority of the time. As I type, I am not sure if this is making sense to anyone reading this, but since I am living it, it makes a lot of sense to me.
So, this is what I came up with...
I put a "brad" in the arrow so I could move it around to show what energy zone I am in for the moment. I found two quotes, which I thought were very fitting for the assignment and for my day to day life, which I added to the bottom of the poster.
"You've done it before, and you can do it now. See the positive possibilities. Redirect the substantial energy of your frustration and turn it into positive, effective, unstoppable determination."
~Marston
and...
"Goals provide the energy source that powers our lives. One of the best ways we can get the most from the energy we have is to focus it. That is what goals can do for us; concentrate our energy.
~Waitley
For the rest of my appointment we went over everything else; my new meds, my progress the last month, my upcoming appointments, therapy...Larry also put my mischievous bottom left two ribs back into place and wrote me a prescription for waist-high (instead of thigh-high) compression stockings. Oh, joy. (Note sarcasm)...In Toledo, Dr. Karabin, said that waist-high stockings would be more effective because when the blood pools, a lot of it pools in the abdomen.
As always, it was a very productive and meaningful appointment; both for my mental state and my physical state. And yes, I have another assignment that is due in June :)
Friday, May 20, 2011
Five For Friday 5/20/11
1. Medical Stuff:
2. Mom's Surprise Party! I'm not going to say much about it here, because I am going to do a post soon that is only about the party...However, I will say that after a couple months of planning and PLANNING, we pulled the party off without a hitch! I'm still amazed I was able to keep my mouth shut that long! I'll post just a couple pics for now...
3. May is Ehlers-Danlos Awareness Month and Vasculitis Awareness Month. My sister, Allie was diagnosed with PAN Vasculitis a couple years ago after almost 50 days in the hospital, and after almost losing her. The Vasculitis awareness shirts we ordered a couple weeks ago came...The proceeds go to the foundation for further research and awareness.
4. I got my first pedi of the season, which happened to be with my Mom, hours before her party. I had to keep making up reasons throughout our pedicure why Allie was texting me a million times (she was in Lansing getting decorations while my Mom thought she was in Maryland not feeling well). This week, I've been sporting my freshly painted toes with my open toe compression stockings.
5. Our friend Brandon came over today and put a new ceiling fan up in our kitchen. We are very, very thankful and are loving the "quiet, gentle breezes," and the fact that it is dust repellent. Thank you Brandon!
- 1 day of PT
- 3 days of Home Rehab
- GI follow-up at U of M. I am going to try and up the Domperidone to see if my symptoms improve.
- Appointment with Dr. Rosen. Theme: Adapting my life
- Started Midodrine for POTS
2. Mom's Surprise Party! I'm not going to say much about it here, because I am going to do a post soon that is only about the party...However, I will say that after a couple months of planning and PLANNING, we pulled the party off without a hitch! I'm still amazed I was able to keep my mouth shut that long! I'll post just a couple pics for now...
After picking Allie up at the airport Friday night and hiding her at our house. So excited!
Classic Allie
Realizing Allie came home after the initial shock of the surprise party
Mom holding CeCe Baby after Kristen, Jake, and CeCe surprised her that they came home too!
Siblings with Andy on a stick. I am obviously saying something. It's a good pic of the other three though.
3. May is Ehlers-Danlos Awareness Month and Vasculitis Awareness Month. My sister, Allie was diagnosed with PAN Vasculitis a couple years ago after almost 50 days in the hospital, and after almost losing her. The Vasculitis awareness shirts we ordered a couple weeks ago came...The proceeds go to the foundation for further research and awareness.
"Know Vasculitis. No Vasculitis."
4. I got my first pedi of the season, which happened to be with my Mom, hours before her party. I had to keep making up reasons throughout our pedicure why Allie was texting me a million times (she was in Lansing getting decorations while my Mom thought she was in Maryland not feeling well). This week, I've been sporting my freshly painted toes with my open toe compression stockings.
5. Our friend Brandon came over today and put a new ceiling fan up in our kitchen. We are very, very thankful and are loving the "quiet, gentle breezes," and the fact that it is dust repellent. Thank you Brandon!
Before
Brandon working hard
After
Thursday, May 19, 2011
A Better Thursday
Where has this week gone? Better yet, where has May gone? I was just looking through my last couple posts, and realized last Thursday's was not the happiest of posts. And since, I am lacking the energy to blog about the other topics I want to blog about, I decided to recap my day; which happens to be a tad bit more uplifting than last week.
First of all, I did not get sick on any exercise equipment. That in itself is a small victory.
I added a couple of new exercises at therapy today. I got to PRANCE on the trampoline. Oh, how I've missed the trampoline. Yes, I did get scolded that I was supposed to JUST prance and hardly come off of the trampoline at all, but that's beside the point. I asked my PT, "How are you going to put an ex-gymnast on the trampoline and tell them just to prance?!" I know, I know, my PT knows best.
For my last exercise at therapy today, I got to take off my compression stockings and walk the balance beam barefoot. Ahhh, it felt like home. You can take the girl out of gymnastics, but you can't take the gymnastics out of the girl. This is to help with proprioception, and with my vascular system...(I forget the exact reason why, so I'll have to ask again at therapy on Monday).
I started my new med for POTS yesterday, and besides feeling like I have ants crawling on my head, I have had no other crazy side effects. I have noticed some improvement with my brain fog so fingers crossed.
Brad and I had a much needed date night. Chipolte, Menard's, and driving around looking at houses for sale and dreaming. Perfect. We are so exciting.
I get to hug my brother in 5 days.
I'm still smiling about the surprise birthday party we threw my Mom last Saturday (which is something I plan on blogging about as soon as I get more pictures).
Dr. Rosen is the best psychiatrist that ever lived. I may be biased; just my opinion.
The sun finally decided to show it's face again.
I'm alive and loved and blessed and busy working on taking my life back.
And for today, that's good enough for me.
First of all, I did not get sick on any exercise equipment. That in itself is a small victory.
I added a couple of new exercises at therapy today. I got to PRANCE on the trampoline. Oh, how I've missed the trampoline. Yes, I did get scolded that I was supposed to JUST prance and hardly come off of the trampoline at all, but that's beside the point. I asked my PT, "How are you going to put an ex-gymnast on the trampoline and tell them just to prance?!" I know, I know, my PT knows best.
For my last exercise at therapy today, I got to take off my compression stockings and walk the balance beam barefoot. Ahhh, it felt like home. You can take the girl out of gymnastics, but you can't take the gymnastics out of the girl. This is to help with proprioception, and with my vascular system...(I forget the exact reason why, so I'll have to ask again at therapy on Monday).
I started my new med for POTS yesterday, and besides feeling like I have ants crawling on my head, I have had no other crazy side effects. I have noticed some improvement with my brain fog so fingers crossed.
Brad and I had a much needed date night. Chipolte, Menard's, and driving around looking at houses for sale and dreaming. Perfect. We are so exciting.
I get to hug my brother in 5 days.
I'm still smiling about the surprise birthday party we threw my Mom last Saturday (which is something I plan on blogging about as soon as I get more pictures).
Dr. Rosen is the best psychiatrist that ever lived. I may be biased; just my opinion.
The sun finally decided to show it's face again.
I'm alive and loved and blessed and busy working on taking my life back.
And for today, that's good enough for me.
Tuesday, May 17, 2011
Home Rehab
I have had some questions about what I do on my home rehab days. As I have gotten stronger, I have been able to add more exercises and a few more reps. My PT has discussed with me that less weight, and higher reps, help create energy in the tissue.
I have learned on my own that one of the most important parts of rehabbing with EDS (for me) is making sure I work all areas of my body-arms, core, back, legs, neck...If I only work one area, the other areas start to feel like they are coming "unglued." I have also learned that rehab for me must remain very consistent. Otherwise, within a few days of not rehabbing, I feel a lot more pain, and like my body is starting to fall apart.
However, there is a fine line with rehabbing because if I do too much, I tend to crash with POTS and depleting my energy. I have also learned that doing too much can cause me a lot of delayed rib, neck, and back pain. Needless to say, I have had to learn to really try and listen to what my body is telling me. This is easier said than done. It is a common occurrence that my PT has to kick me out of the gym. It all is definitely a process, and much of it has been trial and error.
After about six months of learning, this is my basic home regimen that has been developed...As I continue to move along, it will have to continue to be modified.
I start with leg strengthening to help both EDS and POTS
I do 3 rotations of...
Then I work on arms with 3 rotations of...
Then I work on scapula muscles alternating (3 times)
I continue on the exercise ball with...
Before I do floor work, I do balance work on my half foam roller.
Then I end with floor work:
This takes me about an hour, give or take a few minutes, depending on the amount of rest breaks I need to take.
I have learned on my own that one of the most important parts of rehabbing with EDS (for me) is making sure I work all areas of my body-arms, core, back, legs, neck...If I only work one area, the other areas start to feel like they are coming "unglued." I have also learned that rehab for me must remain very consistent. Otherwise, within a few days of not rehabbing, I feel a lot more pain, and like my body is starting to fall apart.
However, there is a fine line with rehabbing because if I do too much, I tend to crash with POTS and depleting my energy. I have also learned that doing too much can cause me a lot of delayed rib, neck, and back pain. Needless to say, I have had to learn to really try and listen to what my body is telling me. This is easier said than done. It is a common occurrence that my PT has to kick me out of the gym. It all is definitely a process, and much of it has been trial and error.
After about six months of learning, this is my basic home regimen that has been developed...As I continue to move along, it will have to continue to be modified.
I start with leg strengthening to help both EDS and POTS
I do 3 rotations of...
- toe rises-15
- squats with overhead arms-10
- lunges-10
- wall squats-20 seconds
- wall tilts (to retrain the vascular system)
Then I work on arms with 3 rotations of...
- Rows with 3 pound weights-10
- Bicep curls with 3 pound weights-10
- Bridges on exercise ball with arm presses with 3 pound weights-10
- Rows sitting on exercise ball with resistance band (placed in bathroom door with bathroom door shut)-10
Then I work on scapula muscles alternating (3 times)
- flies laying over the exercise ball raising arms to the side-10
- flies laying over the exercise ball raising arms behind me-10
I continue on the exercise ball with...
- Ball sit ups-25 x 3
- Ball board holds-body is straight out with legs on the ball and I am resting on my elbows (think push up position)-20 second holds x 3
Before I do floor work, I do balance work on my half foam roller.
- 2 sets of 1 minute standing on each leg
Then I end with floor work:
- Glute Firing on stomach-20
- Glute firing bridges with leg raises-10
- Superwoman's-20 second holds x 3
- Foam roller marches (lay on half foam roller and alternate raising legs, like I am marching)-20
- Pelvic clock holds-5 seconds each direction
This takes me about an hour, give or take a few minutes, depending on the amount of rest breaks I need to take.
Friday, May 13, 2011
Five For Friday 5/13/11
My post from yesterday is back. Everything with Blogger seems to have been fixed.
1. Medical Stuff:
2. Mother's Day! We celebrated Mother's Day with many of the Jaskolski's. We ate delicious food, soaked in the sunshine, and just enjoyed each other's company. It was such a nice day, celebrating all of the special Jaskolski mothers and grandmothers.
3. Mom's Birthday was Monday! (I won't reveal your new age Mama) We inhaled delicious sushi and grilled chicken. Mmmm. I went shopping with my Dad on Wednesday to help him pick out gifts for my Mom. The pressure is on! I really hope she likes her gifts. I tend to shop more like my Dad these days-get in, get out, and done! We will celebrate with dinner and presents on Sunday. Hopefully Kristen, Allie, Jake, and Cece will be able to Skype for present time, and Andy will be allowed to call home. Fingers crossed!
4. On Saturday, Josh, Jason, Sara, Brad, and I went to dinner and then to a Lansing Roller Derby Vixens game. If I am being honest, I had no clue about roller derby before Saturday. By the end, I was hooked. I think I have a closet roller derby vixen ready to bust out of me. If it weren't for POTS and EDS, I'd be practicing tomorrow. I loved the uniforms...tutus, crazy tights, bright colors, crazy makeup. Needless to say, I am a Lansing Roller Derby Vixen fan now (note my official vixen t-shirt). I particularly liked the vixens named, "Yoko Oh No You Didn't," and "Dawn K. Kong."
5. I got this today. No judging. I know you are all secretly jealous ;) (Remember, I only like him in an, "I want to pinch his cheeks kind of way")...When Allie and Jenny visit me next, we are going to watch it together....again.
1. Medical Stuff:
- Abscess/Cellulitis on lip, was put on an antibiotic, and I am happy to report that it is working!
Don't mind the fact that I look scary and miserable. I am showing that my upper lip is almost back to normal. Yay for that!
- 2 Days of PT
- 2 Days of home rehab
2. Mother's Day! We celebrated Mother's Day with many of the Jaskolski's. We ate delicious food, soaked in the sunshine, and just enjoyed each other's company. It was such a nice day, celebrating all of the special Jaskolski mothers and grandmothers.
3. Mom's Birthday was Monday! (I won't reveal your new age Mama) We inhaled delicious sushi and grilled chicken. Mmmm. I went shopping with my Dad on Wednesday to help him pick out gifts for my Mom. The pressure is on! I really hope she likes her gifts. I tend to shop more like my Dad these days-get in, get out, and done! We will celebrate with dinner and presents on Sunday. Hopefully Kristen, Allie, Jake, and Cece will be able to Skype for present time, and Andy will be allowed to call home. Fingers crossed!
The best Mama
Being goofy...I don't even remember what we were laughing about
4. On Saturday, Josh, Jason, Sara, Brad, and I went to dinner and then to a Lansing Roller Derby Vixens game. If I am being honest, I had no clue about roller derby before Saturday. By the end, I was hooked. I think I have a closet roller derby vixen ready to bust out of me. If it weren't for POTS and EDS, I'd be practicing tomorrow. I loved the uniforms...tutus, crazy tights, bright colors, crazy makeup. Needless to say, I am a Lansing Roller Derby Vixen fan now (note my official vixen t-shirt). I particularly liked the vixens named, "Yoko Oh No You Didn't," and "Dawn K. Kong."
Who is that crazy dude behind Sara and I?
Jason (with my scarf), Josh, Brad
Cheesin'
Vixens celebrating their win against the Traverse City Toxic Cherries
5. I got this today. No judging. I know you are all secretly jealous ;) (Remember, I only like him in an, "I want to pinch his cheeks kind of way")...When Allie and Jenny visit me next, we are going to watch it together....again.
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