Monday, February 28, 2011
RDD
Happy Rare Disease Day everyone! I'm off to Mishawaka to celebrate with lots and lots of shots...or should I say injections :)
Sunday, February 27, 2011
Five for Friday...a little late 2/27/11
I've been soaking up every bit of family time since we had Andy's Army going away party on Friday. Since I have been low on sleep with all of the excitement, my down time has been spent resting, recovering, and replenishing my spoons...Needless to say blogging has gone by the wayside this weekend, but I should be able to get back on track since prolotherapy round 2 is tomorrow and I will be laying low for the next few days.
1. Medical Stuff:
- 2 days of PT.
- The PT student did her In-service on EDS and I went to answer questions and educate the therapists from a patient's perspective. I will definitely be blogging more about this.
- 2 days of Home Rehab.
2. I walked up to receive communion for the fourth week in a row. This may seem small, but it is a reminder of progress for me each week I am able to do so without sickness. Also since consistency is an issue with EDS and POTS, four consecutive weeks makes it feel like even more of an achievement.
3. Took a road trip with Holly, Sue, Katy, and my Mom to see the vacation house we rented for a week in August. Since Lake Michigan was still frozen and there was snow everywhere, it made me even more ready for summer. Can't wait to go back when the sand is Hot, Hot, Hot!
4. Andy's Going Away Party! Allie and Gabe flew home! My cousins and Aunts and Uncles came into town! Spent time with great friends and family to celebrate my brother. I will post more about this very special day soon!
Monday, February 21, 2011
Medical ID
I received Dr. Lavallee's notes from our visit and something that took me by surprise is that he recommends I get a Medical Alert ID Bracelet....I have many questions about this one..
From where?
What would it say? POTS and EDS? Would Asthma have to be a part of it too?
Would I have to specify the type of EDS on the bracelet? Would there even be enough room?
Would a paramedic or ER doc even know what either disorder is?
Would it be better to carry something in my wallet/purse?
Anyone else have one of these bracelets? I guess I have more questions for the docs when I see them soon...
Oh, and remember those EDS skin folds on my eyes that give me "an almost Asian look?" In his notes, he referred to them as epicanthal folds. Interesting stuff.
From where?
What would it say? POTS and EDS? Would Asthma have to be a part of it too?
Would I have to specify the type of EDS on the bracelet? Would there even be enough room?
Would a paramedic or ER doc even know what either disorder is?
Would it be better to carry something in my wallet/purse?
Anyone else have one of these bracelets? I guess I have more questions for the docs when I see them soon...
Oh, and remember those EDS skin folds on my eyes that give me "an almost Asian look?" In his notes, he referred to them as epicanthal folds. Interesting stuff.
Friday, February 18, 2011
Five For Friday 2/18/11
1. Medical Stuff:
3. Brad and I had a really nice, relaxing, low-key Valentine's Day. I attempted at making HIM dinner for once...I ended up buying a Rotisserie Chicken and putting it on a fancy plate, BUT I did make scalloped potatoes and put the veggie steamers in the microwave. I'm getting there! The dinner included all four food groups and a candle! I even made lemon bars and surprised him with a Flip Cam...What else could you ask for? :)
4. I got BOB SEGER tickets!!!!!!!!! (which was my V-Day present). Van Andel, here we come!!! My Mom, Dad, Mom-in-Law, Dad-in-Law, Brad and myself will be there April 2nd. I am hoping for a feel okay day!
5. I still can't get over people's genuine kindness! Thank you CIA for the awesome cards and Biggby gift card! You guys made me feel so loved and special and I am forever grateful!! Krystin, Jordan, Meghan, Brian, and Cara~Your encouragement, prayers, and thoughts are so appreciated!
- 3 sessions of PT-2 strengthening and 1 soft tissue
- 2 days of home rehab
- Used my topical pain cream for the first time. It did help take some of my back and neck pain away. I love that it's not another pill I have to take.
- Had the Rest and Recovery Talk.
- Had an hour session with Dr. Rosen. He definitely helps me get my head on straight.
3. Brad and I had a really nice, relaxing, low-key Valentine's Day. I attempted at making HIM dinner for once...I ended up buying a Rotisserie Chicken and putting it on a fancy plate, BUT I did make scalloped potatoes and put the veggie steamers in the microwave. I'm getting there! The dinner included all four food groups and a candle! I even made lemon bars and surprised him with a Flip Cam...What else could you ask for? :)
4. I got BOB SEGER tickets!!!!!!!!! (which was my V-Day present). Van Andel, here we come!!! My Mom, Dad, Mom-in-Law, Dad-in-Law, Brad and myself will be there April 2nd. I am hoping for a feel okay day!
5. I still can't get over people's genuine kindness! Thank you CIA for the awesome cards and Biggby gift card! You guys made me feel so loved and special and I am forever grateful!! Krystin, Jordan, Meghan, Brian, and Cara~Your encouragement, prayers, and thoughts are so appreciated!
Positive Pick Me Ups
Today while I was RESTING, I found this blog and fell in L-O-V-E. It went immediately into my favorites. Just a lot of great food for thought all compiled in one place.
As I was reading, this poem really struck a chord with me, especially this line: "No one else may have the blessings these problems will bring you."
The Monument
As I was reading, this poem really struck a chord with me, especially this line: "No one else may have the blessings these problems will bring you."
The Monument
God,
Before He sent his children to earth
Gave each of them
A very carefully selected package
Of problems,
These,
He promised, smiling,
Are yours alone, No one
Else may have the blessings
These problems will bring you.
And only you
Have the special talents and abilities
That will be needed
To make these problems
Your servants.
Now go down to your birth
And to your forgetfulness, Know that
I love you beyond measure.
These problems that I give you
Are a symbol of that love.
These monuments you make of your life
With the help of your problems
Will be symbols of your
Love for me,
Your Father.
by Blaine M. Yorgason
Before He sent his children to earth
Gave each of them
A very carefully selected package
Of problems,
These,
He promised, smiling,
Are yours alone, No one
Else may have the blessings
These problems will bring you.
And only you
Have the special talents and abilities
That will be needed
To make these problems
Your servants.
Now go down to your birth
And to your forgetfulness, Know that
I love you beyond measure.
These problems that I give you
Are a symbol of that love.
These monuments you make of your life
With the help of your problems
Will be symbols of your
Love for me,
Your Father.
by Blaine M. Yorgason
Thursday, February 17, 2011
R & R
So today I got to therapy ready to get on the full body gym, and my PT pulled me into one of the exams room instead. She said we were going to talk first today. Uh oh. She said she was watching me on Monday and was worried that I am overdoing it, and that we need to think more about pacing. Ughhhhh, "pacing"...I have developed a strong dislike for that word ever since I was diagnosed. She asked me how I have been doing after therapy and I was honest. I said some days I feel great and do completely fine and other days I crash hard. She asked me about how I was after Monday and I admitted that I went to Meijers afterwards (I was supposed to go straight home and rest), and by Tuesday morning I was throwing up and had to sleep during the day. Busted.
I told her that this is my problem...I know how to train. I trained 30 hours a week growing up to do a sport I loved. But I am not sure how to train now for my new sports of EDS and POTS. These are two completely different animals.
My PT talked to me about the importance of rest and recovery for me and how it is just as important a part of my therapy program as my exercises and medications. She explained that each cell in my body that expends energy needs the proper recharge time to deal with these disorders. I told her that that made sense, but that I feel so guilty to just lay and rest during the day. I said I constantly feel like I need to be doing MORE to get better.
This is when she bopped me on the head and said, REST and RECOVERY is part of the equation in getting you better! Sighhhhhhhhhhhhhhhhhhhhhhhh.
I told her that I feel like I HAVE made progress in the last couple of months and that I feel that therapy has been crucial in making me stronger to help control the pain. I also explained that I feel like the activity I have been doing has allowed me to slowly become more functional. She did not argue with me, and in fact agreed with me wholeheartedly but, again stressed that part of therapy with two chronic illnesses is to learn pacing and to figure out my limits. And the fact that I was sick Tuesday showed I surpassed my limits and it caught up with me.
So long story short, my PT is going to call Dr. Lavallee and discuss with him his views on training with EDS and POTS. I am going to work hard on resting and trying out some meditation tapes after I complete an exercise or therapy session. I am going to try not to feel guilty because "taking care of me is what is most important, and R & R is part of my therapy program."
I am going to continue to keep a journal to recognize my limits. We talked about the analogy of being given a two liter of energy everyday and figuring out how I was going to expend it to do what I needed to do (while PACING the use of my 2 liters) to get me to the end of the day still feeling okay.
My therapy program is going to remain consistent with what I have been doing. We will continue to add exercises and more and more joint strengthening as I go but I must keep up my end by allowing enough recovery time each day. That is my new CHALLENGE, which is gonna be a hard one for me, but I will do my best. After many tears on my part, we hugged it out and she told me she was proud of me and that I have come a long way since summer and she needs to ensure that I keep progressing. I told her I was proud of myself too. I was then allowed to go to work for the next half hour in the therapy gym. And now I am home, sitting here resting, resting, resting....
"Rest when you're weary. Refresh and renew yourself, your body, your mind, your spirit. Then get back to work." ~Marston
I told her that this is my problem...I know how to train. I trained 30 hours a week growing up to do a sport I loved. But I am not sure how to train now for my new sports of EDS and POTS. These are two completely different animals.
My PT talked to me about the importance of rest and recovery for me and how it is just as important a part of my therapy program as my exercises and medications. She explained that each cell in my body that expends energy needs the proper recharge time to deal with these disorders. I told her that that made sense, but that I feel so guilty to just lay and rest during the day. I said I constantly feel like I need to be doing MORE to get better.
This is when she bopped me on the head and said, REST and RECOVERY is part of the equation in getting you better! Sighhhhhhhhhhhhhhhhhhhhhhhh.
I told her that I feel like I HAVE made progress in the last couple of months and that I feel that therapy has been crucial in making me stronger to help control the pain. I also explained that I feel like the activity I have been doing has allowed me to slowly become more functional. She did not argue with me, and in fact agreed with me wholeheartedly but, again stressed that part of therapy with two chronic illnesses is to learn pacing and to figure out my limits. And the fact that I was sick Tuesday showed I surpassed my limits and it caught up with me.
So long story short, my PT is going to call Dr. Lavallee and discuss with him his views on training with EDS and POTS. I am going to work hard on resting and trying out some meditation tapes after I complete an exercise or therapy session. I am going to try not to feel guilty because "taking care of me is what is most important, and R & R is part of my therapy program."
I am going to continue to keep a journal to recognize my limits. We talked about the analogy of being given a two liter of energy everyday and figuring out how I was going to expend it to do what I needed to do (while PACING the use of my 2 liters) to get me to the end of the day still feeling okay.
My therapy program is going to remain consistent with what I have been doing. We will continue to add exercises and more and more joint strengthening as I go but I must keep up my end by allowing enough recovery time each day. That is my new CHALLENGE, which is gonna be a hard one for me, but I will do my best. After many tears on my part, we hugged it out and she told me she was proud of me and that I have come a long way since summer and she needs to ensure that I keep progressing. I told her I was proud of myself too. I was then allowed to go to work for the next half hour in the therapy gym. And now I am home, sitting here resting, resting, resting....
"Rest when you're weary. Refresh and renew yourself, your body, your mind, your spirit. Then get back to work." ~Marston
Tuesday, February 15, 2011
23!
Happy Birthday to my little sister who is so incredibly strong. I look up to you everyday! Love you so much Allie!!
Monday, February 14, 2011
Friday, February 11, 2011
Five For Friday 2/11/11
1. Medical Stuff:
2. I went to a doctor's appointment and it wasn't mine! I went with my brother to get his knee checked out. It looks like nothing serious but we will be therapy buds for the next few weeks while he makes sure his knee is ready for basic training and Officer Candidate School.
3. Brad and I went on one of our favorite dates. Target, church, and Mongolian BBQ. You know you are married when.... :)
4. I saw "No Strings Attached" with Theresa. It was better than I thought it would be. I cried a few times....Don't judge me.
5. We downloaded Skype! I finally got to Skype my Cici baby. How can you resist this face? I wish I could kiss those cheeks through cyberspace.
- Had Prolotherapy treatment #1 Monday on my neck and upper back.
- Saw Larry Tuesday in the office-We talked about how I am doing and goals to set. We decided that it is best to still wait to see Dr. Grubb and hear another opinion on POTS treatment.
- The cardiologist called and said my blood work looked good.
- Had PT Thursday. My PT pretty much said I am a "lifer." I'm okay with that if it gets me to where I need to be. I also met another EDS person at therapy this week.
- Did home rehab Wednesday and Friday.
2. I went to a doctor's appointment and it wasn't mine! I went with my brother to get his knee checked out. It looks like nothing serious but we will be therapy buds for the next few weeks while he makes sure his knee is ready for basic training and Officer Candidate School.
3. Brad and I went on one of our favorite dates. Target, church, and Mongolian BBQ. You know you are married when.... :)
4. I saw "No Strings Attached" with Theresa. It was better than I thought it would be. I cried a few times....Don't judge me.
5. We downloaded Skype! I finally got to Skype my Cici baby. How can you resist this face? I wish I could kiss those cheeks through cyberspace.
Thursday, February 10, 2011
Gravity
Do you remember how one of my 50 goals for 2011 is to choreograph a dance? Growing up, I was always choreographing with gymnastics friends and my sister, and it has always been a love of mine. I helped my sister choreograph one of her last floor routines. Dancing is definitely a hobby that I want to work towards to be able to do again with stamina.
I have thought quite a bit about songs I'd like to use to choreograph, and although I am not a huge John Mayer fan, this song keeps surfacing as one that I may consider to accomplish my goal...It is a meaningful and symbolic song for me for a variety of reasons...And I think it's a perfect POTS song.
I had to go with the long, live version. Love the sound.
"Just keep me where the light is..." Love it.
I have thought quite a bit about songs I'd like to use to choreograph, and although I am not a huge John Mayer fan, this song keeps surfacing as one that I may consider to accomplish my goal...It is a meaningful and symbolic song for me for a variety of reasons...And I think it's a perfect POTS song.
I had to go with the long, live version. Love the sound.
"Just keep me where the light is..." Love it.
Thursday Bragging
I'm sitting...ok lying here after PT trying to get my body to move but not having much luck. I guess that is to be expected with my first PT session after prolo. I did surprisingly well during therapy but I am definitely feeling it now.
On the Dysautonomia POTS FB page this morning, this status caught my eye:
“It is important that you recognize your progress and take pride in your accomplishments. Share your achievements with others. Brag a little. The recognition and support of those around you is nurturing.” ~Rosemarie Rossetti
This quote was very timely today. For some reason, I have been getting a little down on myself lately. Sometimes, I have to remind myself I didn't ask for this and it's not my fault. Every once in a while I find everything catching up to me and taking it's toll. I desperately want answers to the "big stuff" like going back to work and having kids, and those concrete answers just aren't there right now. I saw Larry on Tuesday and we talked about the importance of constantly setting smaller goals to help me work towards the bigger goals, so that is what I am working hard on.
That FB status got me thinking. If I had to choose an achievement for today, it would be that I did an hour straight of therapy. This hour allowed me to work all muscles groups while sitting and STANDING. I walked out of therapy on my own two legs to my car that was not parked in a handicap spot. I then stopped at Walgreens to pick a few things up without sitting in a wheelchair. So there you have it~That is my bragging for the day.
Hard work, no wheelchair, and endorphins pumping.... The sun shining through our living room window as I type....The people I have in my life who ARE so nurturing and supportive. I am blessed. It is a great day to be alive.
On the Dysautonomia POTS FB page this morning, this status caught my eye:
“It is important that you recognize your progress and take pride in your accomplishments. Share your achievements with others. Brag a little. The recognition and support of those around you is nurturing.” ~Rosemarie Rossetti
This quote was very timely today. For some reason, I have been getting a little down on myself lately. Sometimes, I have to remind myself I didn't ask for this and it's not my fault. Every once in a while I find everything catching up to me and taking it's toll. I desperately want answers to the "big stuff" like going back to work and having kids, and those concrete answers just aren't there right now. I saw Larry on Tuesday and we talked about the importance of constantly setting smaller goals to help me work towards the bigger goals, so that is what I am working hard on.
That FB status got me thinking. If I had to choose an achievement for today, it would be that I did an hour straight of therapy. This hour allowed me to work all muscles groups while sitting and STANDING. I walked out of therapy on my own two legs to my car that was not parked in a handicap spot. I then stopped at Walgreens to pick a few things up without sitting in a wheelchair. So there you have it~That is my bragging for the day.
Hard work, no wheelchair, and endorphins pumping.... The sun shining through our living room window as I type....The people I have in my life who ARE so nurturing and supportive. I am blessed. It is a great day to be alive.
Tuesday, February 8, 2011
Imported From Detroit
For my own documenting sake, I wanted to post (in my opinion) the BEST commercial from The Super Bowl. It gave me chills and goosebumps all at the same time. I heard it on the radio coming home from Indiana yesterday, and it made me emotional all over again~Besides making me feel such a sense of pride as a Michigander, there's just something about that guy's voice that gets me every time.
"Making the Invisible, Visible"
This pretty much sums it up. Honestly, the first thing I thought of when I watched this, was "Welcome to my world." Out of all the videos I have watched and things I have read, this one has rang the most true for me...And she talks about struggling with POTS as well. I love, love, love that she is working towards a marathon. Makes me wish I could hug her.
I'm looking forward to the whole documentary. Awareness is key.
http://www.youtube.com/user/LaraBloomEDS
I'm looking forward to the whole documentary. Awareness is key.
http://www.youtube.com/user/LaraBloomEDS
“We must embrace pain and burn it as fuel for our journey.” -Miyazawa
We got to the office and the nurse came and took my vitals. Dr. Cantieri came in and we talked about what would happen, and he asked if I had questions. Of course I did. He answered everything like I will be using the Testosterone cream for probably about 8 weeks to help my body heal, I need to come back in three weeks for round 2, that I should not get discouraged if I do not feel much different after the first treatment....Dr. Cantieri explained that it is usually after the second treatment that I would be able to tell if the prolotherapy was making a difference. He said I was fine to go to PT Thursday and reminded me that prolo's success goes hand in hand with a strong PT program. He explained that I was to take no anti-inflammatory's for pain afterwards, and I could not use ice because it is the inflammation that is key to the healing process. I was told that Tylenol and heat were okay. After talking through everything, I was asked to sign the consent form. I always have a flash of panic before I sign one of those papers, but I heard Lisa in my head, saying "Do it afraid," and I autographed that paper.
Then it was "time to get to work," as Dr. Cantieri put it. He first mapped out where he was going to inject with a pen similar to a Sharpie. He then told me that for each injection he would do a skin numbing injection first. I started by sitting up and he injected about 16 injections into my mid back. Then I layed face down and he injected my upper back and neck up to my skull. We chatted away while Brad watched and I kept saying "this is not bad at all." We talked about our families, being Italian, the craziness of the past year, how I have been counting down the days to getting prolo which Dr. Cantieri laughingly replied with, "That is a little sick..."
At one point he jokingly asked Brad if he wanted to inject a few in my back and Brad was VERY smart to decline. I asked what was in the solution and he said the proliferants were dextrose, lidocaine, and something else that starts with an "f" that I can't remember. There were about 5 spots that were injected that made me speak up loudly and pretty much jump off of the table, but that is not bad considering how many I had.
After an hour, Dr. Cantieri was finished and I asked him how many total injections I had. He counted and said 55, but 110 if you count the numbing injections. Crazy. At this point I still kept saying how I thought it was not bad at all. Then I stood up and whoa, the pain that everyone warned me about hit me hard. At that moment I just wanted to be home. I checked out, paid the bill, made my follow up for my second treatment on February 28th, and we were on our way. It then set in that we still had 2.5 hours in the car, which did not make me happy to say the least. I lasted about 2 minutes in the front seat before I was in the backseat laying down. The best way I can describe the pain is the stiffest I've ever felt with a lot of burning and feeling like my neck and back were on fire.
We made it home by 5. I'm not sure who was happier~Brad or me seeing how Brad had to hear from me about 1567896757 times how bumpy the roads were. :) Brad put my shoes on so I could walk into the house since I was having a terrible time with any kind of bending. I made it into the house where I immediately built up a stack of pillows with my heating pad on top so I could lean back against it. The rest of the night I took it very, very easy. I was able to sleep pretty well propped up in our loveseat. This morning when I woke up I felt super stiff but I felt a bit better. As I SLOWLY got ready for another doctor's appointment I had this morning, I realized some of the stiffness was feeling better as I moved around. I still feel pretty uncomfortable today, but it is nothing like last night.
So I survived round one. I just hope and pray that it will help give me better back and neck stability, and it all will have been worth it.
“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.” -Lance Armstrong
Friday, February 4, 2011
Five For Friday 2/4/11
1. Medical Stuff:
I had two sessions of PT.
Bought special gloves to use to help put on my compression stockings.
A lot of exercises were done at home.
I rescheduled and rescheduled again prolotherapy for Monday.
I had blood work to test my potassium since Florinef can deplete potassium. My potassium was normal but my glucose was low.
2. Blizzard! We got a foot of snow and Brad had 2 snow days. I promised Allie pictures so here you go Al. They're not great but you get the idea.
I had two sessions of PT.
Bought special gloves to use to help put on my compression stockings.
A lot of exercises were done at home.
I rescheduled and rescheduled again prolotherapy for Monday.
I had blood work to test my potassium since Florinef can deplete potassium. My potassium was normal but my glucose was low.
2. Blizzard! We got a foot of snow and Brad had 2 snow days. I promised Allie pictures so here you go Al. They're not great but you get the idea.
3. My Mom, Dad, Brad and I went to Ann Arbor Saturday to cheer on the University of Maryland Gymnastics team against U of M, Kent State, and the University of Chicago-Illinois. The Terps looked great. The best part of the night was being able to finally thank Brett (the head coach) in person for everything he did for my family when Allie was in the hospital for 46 days. Talk about emotional. I also had the chance to talk to the whole team after the meet and thank them for their outpouring of support they have shown me the past few months. The Terp family is amazing.
Brad and I in our Maryland Red and Black
4. Snow Day Fun:Brad taught me how to play Mancala during blizzard day. I got hooked fast. Of course Brad had to beat me many times but it was something to do that was different and fun while we were snowed in.
I organized our linen closet, which was desperately in need of some TLC.
I watched MSU get demolished by Iowa. So sad.
5. My CDs of the week that kept me company were: I and Love and You by the Avett Brothers and Sigh No More by Mumford and Sons.
Every time this song came on by Mumford and Sons it sent chills up my spine as I thought about the three Holt teens who were killed last weekend in a car accident that involved drunk driving. I can't even imagine. My thoughts and prayers are with their friends and families.
Thursday, February 3, 2011
Third Time's the Charm?
My body hurts...
and not because of prolotherapy.
I realized I never updated my blog after having to reschedule AGAIN. 24 hours before I was supposed to have prolo, it was still blizzarding. I looked up Mishawaka's news channels, and the city was under a state of emergency and the whole city was asked not to drive. Since I knew I had to give 24 hours notice for cancellations, I called and left a message asking what my options were. A little while later the lady who does the scheduling called from her home because the office was shut down and said I could come Monday at 1:00 instead. I tried really, really, REALLY hard for Friday but no such luck. So I will now have prolo on Monday...if the stars are aligned.
And it is supposed to snow. AGAIN. We are thinking about going Sunday and watching the Super Bowl in a hotel but we will see. I guess these are the problems you run into when you have far away doctor's appointments in the Midwest during the winter. How many more days until spring?
Thanks to all who sent me good luck wishes and/or texts and calls asking how it went today...And sorry for not updating. Fingers crossed for Monday!
So that brings me to my non-prolo pain, which I'm actually hoping is good pain...as in it hurts so good. Since I wasn't going to Indiana, I called this morning and asked if I could come into therapy, and the person I spoke to said I could come in at 1:30. Brad drove me, and as we drove in the beautiful, warm sunshine, on the nice, clear roads, I could not help but think that we SO could have made the trip to Mishawaka. Oh. Well.
I started therapy at 1:30 on the dot and at 2:45, I was finally finished. My PT kicked my EDS behind today. For a few moments, I felt like I was training with Jillian from the Biggest Loser. And I loved it. She had me do a circuit where I did exercises that worked all of my joints, and boy did it work them. I am quite sore tonight...and can only imagine how I will feel come morning...and the best part about it is I'm excited that my muscles arescreaming sore. Ice and the massage pillow are my BFF's tonight.
Please, please, please Mother Nature allow me to have my 20 some injections on Monday and get home safely. I'm ready to get on with this already.
and not because of prolotherapy.
I realized I never updated my blog after having to reschedule AGAIN. 24 hours before I was supposed to have prolo, it was still blizzarding. I looked up Mishawaka's news channels, and the city was under a state of emergency and the whole city was asked not to drive. Since I knew I had to give 24 hours notice for cancellations, I called and left a message asking what my options were. A little while later the lady who does the scheduling called from her home because the office was shut down and said I could come Monday at 1:00 instead. I tried really, really, REALLY hard for Friday but no such luck. So I will now have prolo on Monday...if the stars are aligned.
And it is supposed to snow. AGAIN. We are thinking about going Sunday and watching the Super Bowl in a hotel but we will see. I guess these are the problems you run into when you have far away doctor's appointments in the Midwest during the winter. How many more days until spring?
Thanks to all who sent me good luck wishes and/or texts and calls asking how it went today...And sorry for not updating. Fingers crossed for Monday!
So that brings me to my non-prolo pain, which I'm actually hoping is good pain...as in it hurts so good. Since I wasn't going to Indiana, I called this morning and asked if I could come into therapy, and the person I spoke to said I could come in at 1:30. Brad drove me, and as we drove in the beautiful, warm sunshine, on the nice, clear roads, I could not help but think that we SO could have made the trip to Mishawaka. Oh. Well.
I started therapy at 1:30 on the dot and at 2:45, I was finally finished. My PT kicked my EDS behind today. For a few moments, I felt like I was training with Jillian from the Biggest Loser. And I loved it. She had me do a circuit where I did exercises that worked all of my joints, and boy did it work them. I am quite sore tonight...and can only imagine how I will feel come morning...and the best part about it is I'm excited that my muscles are
Please, please, please Mother Nature allow me to have my 20 some injections on Monday and get home safely. I'm ready to get on with this already.
Tuesday, February 1, 2011
Riding the Roller Coaster
Let me just say that I am realizing that Ehlers Danlos and POTS are such weird disorders. There is so much inconsistency with how they affect me day to day. Last week was such a better week for me. I didn't need my cervical collar as much, it felt like my meds were really doing a good job controlling the POTS, and I was able to rehab with much more stamina. Then Sunday and Monday came and POTS and EDS decided to hit me like a ton of bricks. My joints felt so loose and I had to use my wheelchair again. Sigh.
I keep saying I just don't understand these disorders. I have kept journal after journal trying to pinpoint patterns so I can try and predict good days and not so good days. So far these are a few of the patterns I have been able to find...
Period week is the worst for POTS and EDS
When I have GI problems my POTS is worst
When I have bad neck instability my POTS is worst
When I am in motion, I can often make my EDS pain feel better
As I move forward, I am gathering, that it is the therapy that will bring me more consistency with controlling EDS as I train and condition my body more and more on stabilizing and protecting my joints...and it is the trial and error with meds, along with a good salt/liquid intake that will hopefully bring me more consistency with POTS.
When I saw Dr. Lavallee, he told me that if he does not go to the gym for three days he starts having more pain because he feels his joints getting more lax. Dr. Lavallee has had to accept strengthening and therapy as one of his basic needs like eating and sleeping in order to keep from becoming disabled. I have now realized that therapy and maintaining good muscle tone, is not a luxury for me, but also a need, and a way of life in order to keep my body intact.
I have to remember to keep the big picture in mind (something easier said than done). If I think back to where I was this summer to where I am now, I AM having better days. I have walked up for communion two weeks in a row. I was able to do a small amount of mall walking with my Dad last week. I am able to do more standing up exercises at therapy without getting sick.
So I guess what I do "get" about EDS and POTS is it is something I need to constantly keep at...progress is just slow. slow, slow, but slow progress is definitely better than no progress. I remember Dr. Lavallee saying it could take six months to a year of therapy and general conditioning before I start seeing major improvements.
When I got to therapy yesterday, I was feeling discouraged with the inconsistency of it all...Then I started my exercises and as I worked out in the gym, I thought about how I really have come a long way since the summer; especially as I was able to stand up and do arms on the recumbent bike.
Dr. Lavallee is someone I now think of when I start to get discouraged. As I did my exercises, I thought about how he was in a wheelchair throughout his childhood, and he has run marathons and climbed mountains as an adult. I thought about how his picture is on the wall at his office for swimming 300 miles.
So something else I "get" about EDS and POTS is it's all about regaining perspective and digging deep to constantly renew my patience, persistence, and determination. I keep telling myself, if Dr. Lavallee can do it, so can I. Maybe I should get W.W.D.L.D. (What would Dr. Lavallee do?) tattooed somewhere ;)
Remember the student at therapy that made my day a few weeks ago? She informed me at therapy yesterday that she has to present to all of the therapists at the end of her internship on a topic of her choice. She said I inspired her to choose EDS, and she invited me to the presentation on February 22nd. I got sooo excited and started rattling off things for her to consider including in her presentation. Like...POTS as a result of EDS, the inconsistency of the pain, how the pain travels, the invisible illness aspect, why us EDS'rs look like we have ADD all the time since we can't sit still because we are constantly trying to find positions that make our joints feel stable....What makes me the most excited that she will be presenting on EDS is that it is often such an overlooked and misunderstood disorder. I get super happy when I hear about people educating other health care professionals on EDS, since that means more of an awareness which can result in more progress and research.
I will definitely be at her presentation. I am excited to learn more about her findings, insights, and management suggestions as I continue to try and understand this strange, strange disorder.
I keep saying I just don't understand these disorders. I have kept journal after journal trying to pinpoint patterns so I can try and predict good days and not so good days. So far these are a few of the patterns I have been able to find...
Period week is the worst for POTS and EDS
When I have GI problems my POTS is worst
When I have bad neck instability my POTS is worst
When I am in motion, I can often make my EDS pain feel better
As I move forward, I am gathering, that it is the therapy that will bring me more consistency with controlling EDS as I train and condition my body more and more on stabilizing and protecting my joints...and it is the trial and error with meds, along with a good salt/liquid intake that will hopefully bring me more consistency with POTS.
When I saw Dr. Lavallee, he told me that if he does not go to the gym for three days he starts having more pain because he feels his joints getting more lax. Dr. Lavallee has had to accept strengthening and therapy as one of his basic needs like eating and sleeping in order to keep from becoming disabled. I have now realized that therapy and maintaining good muscle tone, is not a luxury for me, but also a need, and a way of life in order to keep my body intact.
I have to remember to keep the big picture in mind (something easier said than done). If I think back to where I was this summer to where I am now, I AM having better days. I have walked up for communion two weeks in a row. I was able to do a small amount of mall walking with my Dad last week. I am able to do more standing up exercises at therapy without getting sick.
So I guess what I do "get" about EDS and POTS is it is something I need to constantly keep at...progress is just slow. slow, slow, but slow progress is definitely better than no progress. I remember Dr. Lavallee saying it could take six months to a year of therapy and general conditioning before I start seeing major improvements.
When I got to therapy yesterday, I was feeling discouraged with the inconsistency of it all...Then I started my exercises and as I worked out in the gym, I thought about how I really have come a long way since the summer; especially as I was able to stand up and do arms on the recumbent bike.
Dr. Lavallee is someone I now think of when I start to get discouraged. As I did my exercises, I thought about how he was in a wheelchair throughout his childhood, and he has run marathons and climbed mountains as an adult. I thought about how his picture is on the wall at his office for swimming 300 miles.
So something else I "get" about EDS and POTS is it's all about regaining perspective and digging deep to constantly renew my patience, persistence, and determination. I keep telling myself, if Dr. Lavallee can do it, so can I. Maybe I should get W.W.D.L.D. (What would Dr. Lavallee do?) tattooed somewhere ;)
Remember the student at therapy that made my day a few weeks ago? She informed me at therapy yesterday that she has to present to all of the therapists at the end of her internship on a topic of her choice. She said I inspired her to choose EDS, and she invited me to the presentation on February 22nd. I got sooo excited and started rattling off things for her to consider including in her presentation. Like...POTS as a result of EDS, the inconsistency of the pain, how the pain travels, the invisible illness aspect, why us EDS'rs look like we have ADD all the time since we can't sit still because we are constantly trying to find positions that make our joints feel stable....What makes me the most excited that she will be presenting on EDS is that it is often such an overlooked and misunderstood disorder. I get super happy when I hear about people educating other health care professionals on EDS, since that means more of an awareness which can result in more progress and research.
I will definitely be at her presentation. I am excited to learn more about her findings, insights, and management suggestions as I continue to try and understand this strange, strange disorder.
Rescheduled...
Well, I am supposed to be having prolotherapy done in an hour, but after much thought and many checks of the weather channel, Brad and I decided it would be best to reschedule because of the blizzard that is coming. Although the storm is not supposed to hit us until tonight, it is supposed to hit Mishawaka this afternoon around the time we would have been driving home.
Talk about bummed. I have been counting down the days until prolo. And now (being the worry wart that I am) I am stressing that the roads won't be okay by Thursday...I tried to ask for a Friday appointment but Friday was booked. So my fingers are crossed for clear roads and safe travels by Thursday morning at 10:00.
People keep reminding me how much it is gonna hurt, but in the long run it's supposed to (hopefully) help take care of a lot of the pain I experience each day. One of the biggest sources of pain I have is muscle guarding pain. Because my ligaments and tendons are so stretched and do not do their job to stabilize my joints, the muscles work overtime to do their job AND the job of the ligaments, causing some major muscle spasms. This creates lots of back and neck pain for me, so the hope is that the prolo will strengthen and tighten the ligaments so that they can do their job again so my muscles can have a break and go back to doing what they are meant to do.
So I say, bring on the pain.
(I realize I may be saying something very different on Thursday :)
While I wait a couple more days for my appointment, I will be doing rehab in my house...I have a feeling Brad will be home tomorrow for a snow day so hopefully we can hunker down, watch the snow fall, and maybe, just maybe, I can convince him to play board games with me.
Talk about bummed. I have been counting down the days until prolo. And now (being the worry wart that I am) I am stressing that the roads won't be okay by Thursday...I tried to ask for a Friday appointment but Friday was booked. So my fingers are crossed for clear roads and safe travels by Thursday morning at 10:00.
People keep reminding me how much it is gonna hurt, but in the long run it's supposed to (hopefully) help take care of a lot of the pain I experience each day. One of the biggest sources of pain I have is muscle guarding pain. Because my ligaments and tendons are so stretched and do not do their job to stabilize my joints, the muscles work overtime to do their job AND the job of the ligaments, causing some major muscle spasms. This creates lots of back and neck pain for me, so the hope is that the prolo will strengthen and tighten the ligaments so that they can do their job again so my muscles can have a break and go back to doing what they are meant to do.
So I say, bring on the pain.
(I realize I may be saying something very different on Thursday :)
While I wait a couple more days for my appointment, I will be doing rehab in my house...I have a feeling Brad will be home tomorrow for a snow day so hopefully we can hunker down, watch the snow fall, and maybe, just maybe, I can convince him to play board games with me.
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