FLIMSY FLOPSY FRIDAY

So my friends, we’ll call today “FLIMSY FRIDAY” because that’s the kind of day I have had! What in the world causes these pitiful proprioception days???? I fell two times within 5 minutes of getting out of bed this morning! The first time I stumbled over a speck of dust on the floor and the second time was far more tragic; I tripped over my big toe. No worries my toe is fine, my knee is a bit achy! So! If this were not enough flailing and falling for the day, I fell a third time and this time I did a great job on my ankle. Yippeeee! Three Cheers for Ila!  The third time was the worst, I was turning in “lesson plans”  at the Mormon church. (Disclaimer- I am not Mormon, just a bit nerdy! I love Genealogy and Genetics so I am teaching a “genetic genealogy class series to some LDS folks).  WELL, so the last fall was a charm because OTHER people were around, it wasn’t just my family. I wanted to cry but I don’t like crying in front of people so I loopedly-loppedly limped away. I drove a little bit and stopped at this little pond (maybe it’s a lake, who knows) and I sat there for an hour or so, I cried a few little tears (that hurt) but mostly just relaxed! Surprise, surprise, I fell asleep too. 

Speaking of relaxing! How often do you relax? Do you ever find yourself just going and going like the energizer bunny because you are afraid you’ll “Crash” if you stop? I’ll admit it; I do and I hope I’m always that way, it keeps me busy! I do enjoy the calm and quiet of nature. Everywhere we have lived in the past few years, I have had my “calm” place, I don’t pick it, it picks me. In Belgium it was a little garden about a block from our home, I loved it! In Indiana it was actually a cross in the middle of the ND campus but it was pretty secluded given that it was at Notre Dame. My “relax” places seem to scream at me: “ILA, be still and enjoy” and I do, every time I am in one of my happy places. Ahhhhh. I wish I could bottle the feeling I encounter when I step into one  of my happy places. This little pond smells amazingly sweet and it’s not just in the spring, it was that way last summer, fall and even during the winter. I think I just love the country. 

If you don’t have a happy place to relax, please find one. Mine are always outdoors! Fresh air is healthy for everyone, sunshine makes my heart smile and it’s always great just to have some time with myself and with God’s wonderful masterpieces. I can’t say that my happy places always reenergize my body but I  can guarantee they always reenergize and stimulate my soul. I believe that 100% of the time, how we feel in our hearts and minds is even more important than how we feel physically. Ponder this for a moment; if your body feels like a million bucks but your sad or mentally drained, that has a drastic effect on your physical being and guess what? I bet you a dollar that you won’t feel like a million bucks anymore! Most things in my life I have no control over whatsoever but the one thing I can control is my attitude/perspective. 

I hope you all have a wonderful weekend! Take some time to “get away” to your special and happy place. If you can’t get there physically, close your eyes and imagine yourself there- Wherever you find yourself, just relax, enjoy the moment, give thanks for another wonderful day and get ready; there’s more just ahead! 

Peace and Hugs,

Limpy Lou!   P.S. This photo is on the opposite side of the road from one of my happy place where I fell asleep today!  :o)

Truths and Ramblings

I could not have said this better myself! I love this little prayer, it made me smile when  a friend sent it to me this morning. 

I've had a tough week so far, this blog is about me being "real" right? So, I'm not even going to pretend it's been "great" or even "good". It hasn't been "bad" per se,  just tough. I've been in a good bit of pain this week, amazingly, it hasn't been my "lower body", it's been my upper body and it has not made for a fun week. I rested yesterday, and when I say I rested, I mean I rested! I got up at 6:00, turned a movie on for Jackson at 8:30 and cuddled up with him; he watched the movie and I slept until 10:30. We had a snack, cuddled back up and started another movie. You know what I did? Sure thing! I slept and he watched the movie.  After that, I took him to school and came back home, hit the couch again and slept until Cole got home at 3:30. The boys and I were all asleep by 9! Now keep in mind, all of this sleeping was after I took my Adderall and Provigil for the day. Wow! I was tired! 

Sometimes I am glad that I have a job where I work mostly from home. Actually I am either working from home or traveling. I do have an occasional meeting at USMA but usually no more than once a month. Do you sometimes feel like the more you "go" the better you feel? My last day of this job is April 30 and I am happy and sad about that. If I get another job in the near future, it will NOT be working from home. I need the "get up and go" factor. I am about to start school again (Go Ila!), so I may not have a job for a while, but who knows. I'm not the brilliant student like my husband, he reads it once and it is forever ingrained! I have to read it, write it, read it again, draw it and tell someone about it....then it is ingrained. I'll just blame that on EDS as well! 

I've been up since 5 this morning, caught up on the work I didn't get done yesterday. Didn't have much, just sent out a few follow-up emails. It's nice to be winding down instead of "drumming up"!  So, Jackson and I are going to see an EDS friend of mine that lives about 20 minutes away. We don't get to see Gary and his family often enough but this is the second time this week. Wow! Maybe we'll go fishing or something. Golf? Roller skating? Hiking? I bet we'll wind up having coffee at Barnes and Noble! Either way, it'll be fun like always and I will laugh. 

It's finally less than a week until my honey comes home! He only has ONE trip left during this travel season, I am so excited! When Andy goes away, I am reminded of how much he adds to my life. Goodness gracious, I LOVE that man. I know sometimes he doesn't completely "get it" but he tries! Every time (almost daily) I drive past this mountain here called "Storm King" I smile from ear to ear. Andy loves to hike and he loves long hikes. Well, one Sunday he said "let's go for a nice, relaxing hike" and I said "let's do it". We went to "Storm King" and we were hiking in the little easy areas and he said "let's go up" and I said "YOU JUST DON'T GET IT SOMETIMES!". Okay, we hiked up and we hiked and hiked. It wasn't all that bad, I can't lie, it kinda sucked a few times! It wasn't as bad as hiking up Mt Ranier a few years ago but it wasn't 100% pleasant either. I like nice trails, planned ones, good ones, sturdy ones; this one was not...Sometimes there was no trail! It was magnificent when we got to the top, so worth the twisted ankle and skinned knee! On the way down this strange man said "You are extremely hypermobile; why don't you have joint support on for this?" I introduced myself and asked what he knew about hypermobility, turns out it wasn't much! He was a Cardiologist from NYC and we had fun talking about hearts and POTS for the next hour. He offered me a job in his office but that's just too far of a drive! Anyway, after that hike I hurt for days! By the time we were done I had 2 twisted ankles, 2 skinned knees, 2 new friends (George and his wife) and most of all, some wonderful memories made with my family! So, I am happy that sometimes Andy "doesn't get it" and doesn't let me cop out! He pushes me, expects a lot of me and won't let me give up! I love that man and I am so blessed to have him in my life. 

I'm done venting for the day! 

Today I want you to count your blessings. Think about the people God has put in your life that have blessed you tremendously. I'll blog about mine later! 

Big Hugs!
Ila 

~T. - I've got you on my mind buddy! I am praying for you and I'm brainstorming! We ARE going to get you some help! Don't doubt that! I won't let you down! I promise! We'll have a fundraiser if we have to. As for now, I'm sending loving thoughts, and healing prayers!  :O)  

Magnificent Monday

It's that time again! It's Magnificent Monday! It's time for updates and goals!

1. No Smoking. I need to continue to stay away from Cigarettes and the Electronic ones. I gave away a brand new carton of Andy's cigarettes so he won't smoke either. I know, I feel like a looser and bad influence for giving them to my friend to have but I'm happy not to have to look at them anymore. Temptation be gone! I have chewed Nicorette a few times this week when I felt like eating a pack of cigarettes. 

2. Go to the gym 5 times, light weights daily with 3 days of cardio.  Honestly, I blew this one last week, only made it to the gym twice. 

3. I also blew the reduce Coca Cola and sugar intake goal. I didn't drink as much as usual but drank more than I had hoped for. 

4. I did great with drinking water this past week and will keep that up!

5. Pace myself. Yeah right, what's that? 

6. Be open to other people's experiences and opinions, even if I disagree. I don't like to judge folks (even though I can be pretty judgmental), I like to help people, not hurt them. I was pretty harsh on a lady last week talking about a bad experience with one of my favorite Docs. I really hurt her feelings and that broke my heart. It took me a day or so but my anger turned to compassion and I knew I had some apologizing to do. Some people with EDS face horrid emotional issues that go along with 

their faulty collagen. I have to remind myself that some people just need someone to listen and care about them in spite of all their craziness. 

7. This week I am going to set a schedule for myself so that I am not running like crazy. 

8. I am going to listen more and talk less- especially to myself :O)

9. I am going to plan 5 EDS outreach projects for the month of May....Ehlers Danlos Awareness Month. My goal is not to make them BIG or Widespread...Just something that may help someone else. 

10. I'm going to keep doing nice things for people and keep sharing with the important people around me how special they are. (I've always been good at this but sometimes we take people for granted and I never want to do that)

11. Get a massage

12. I am going to practice quieting my mind and relaxing my body. 

13. Make T-shirts!

Have a great week y'all. I hope your week is filled with sunshine, smiles and sweetness. 

Hugs and Happiness 

Ila

Weekend Warriors

Wow! Is it Monday already? I’m so tired and hurt so bad (Did I just admit that?) that I can’t even think straight! My awesome friend Molly has been here with me and the boys this weekend and it’s been great. We’ve laughed, at times uncontrollably, we’ve had more than 6 months worth of deep and contemplative conversation, we’ve stayed up way to late, we’ve had fashion shows, makeup lessons, lots of “girl talk” (incase you don’t know, that is much different than contemplative conversation) and most of all, we have had a BLAST. We have both realized the blessing of having a good friend right beside you. We so often forget what a blessing and gift it is to have someone that really, truly and fully “GETS IT”! It’s almost funny that we “forget” how screwy our bodies really are. More often that not, we try to live our lives like nothing is different about us. Most of us smile, push through the pain, hope for balance or a soft floor through the dizziness and relish the wonderful lives God has given us. It’s rare, (at least for Me, Molly, Gary and a few other EDSers I know) that we really talk about how our bodies feel... Why would we? So few people really “get it”. I also think a lot of our “bottling it all up” is based on fear. I don’t want my boss to think that I can’t make that huge presentation for him because I might be in pain or heaven forbid, I might be dizzy that day. I don’t want my family to worry about me all the time and I don’t want my children to know that I am hurting. I really don’t want my husband to think he has a “whiny” wife. I want to be sunshine, not a sad streak! Molly feels the same way, we are good at smiling through it all...But when we get together, we let it all out and that’s good. We really understand. 

We saw Gary yesterday and as always I laughed a few times until I cried. Maybe it’s all of that laughing that made me so achy today! Molly and Gary never get to visit with each other because she lives so far away, I get to see Gary often. I am so happy that they got to spend some time together. We all went to hear Dr. David Levy’s presentation on “Should we keep Faith Out Of Medicine?”, it was great...Not as good as his book that I think everyone should read, it’s called “Gray Matter”. 

So, here’s to good friends that “get it” cause they’ve “got it”. 

Molly, I know you’ll read this, thank you girl, I love you. You are one AMAZING woman and I am so blessed that God brought us into each others lives. This weekend you have helped me understand far more than EDS, it’s been great! 

Gentle Hugs, 

Ila Marie

Comments

I think it is so cute that so many people read this, find me on Facebook and comment to me there. Just to let y'all know, it's okay to comment here too! Either way, I enjoy the feedback and questions!
Big Hugs!
Ila

Prolo and Gray Matter (this is long, sorry)

Prolo and Gray Matter

The book I am reading is called “Gray Matter”, the Doctor that wrote it is Dr. David Levy. Now let’s not confuse him with the EDS Orthopedic Surgeon that we all know and admire, Dr. Howard Levy. Dr. David Levy is a Neurosurgeon and he practices medicine in California. I have learned so much from this book and like it so much that once I finish it, I am reading it again! When I began reading the book I didn’t ever expect that I would be able to correlate it to Ehlers Danlos.. The thought didn’t even cross my mind. 

If you have EDS, chances are you are familiar with Vascular EDS. For those of you not familiar with this type of EDS, some call it VEDS, others call it Type 4, we all call it deadly. VEDS is the most pestilent type of Ehlers Danlos. VEDS is caused by Structural defects in the proal chain of type 3 collagen, and is encoded by the COL3A1 gene. VEDS, like all EDS is an autosomal dominant condition. It is believed that 1 in 250,000 people have VEDS. It is my opinion that any person with any type of EDS is at an elevated risk of dissection, aneurysm, or rupture, whether they have VEDS or not. We not only have to think about the Vascular system but the digestive system and for women, the reproductive system as well. Knowing that you are at risk for VEDS is pertinent, especially in an emergent situation. For instance, you go to the ER for a searing pain in the abdomen, chest or head and they do the “typical” workup. Yeah, that’s not so good! If it is a VEDS related incident, seconds count! EDS patients, please educate yourselves and your loved ones about the protocol for a VEDS patient, some places just won’t know what in the world to do with you! Knowledge is power and in this case, possibly life saving! 

NOW, what in the world does this have to do with “Gray Matter”? Well, as an EDSer I have heard many of my “Bendy Friends” talk about embolisms, angiograms, coils, glue, ruptures, dissections and aneurysms. These Bendy Friends are all to familiar with these terms because they have VEDS and have had “vascular incidents” or organ rupture. My good friend Amanda passed away in December after an operation to place coils for vessel repair. This wasn’t her first party with her surgeon, it was a common procedure for her. Her entire body, especially internally was so weak and fragile. I can only imagine and assume that her vessels and organs were a lot like “wet kleenex”. Reading Dr. Levy’s book has given me a wonderful insight into the world of Neurosurgery and what happens on the other side of the anesthetized patient. My first healthcare job was in a CVICU and as I got to know the Docs I worked with and gained their trust, I experienced some pretty awesome things! I loved scrubbing in on CABG’s (open heart surgery in “normal terms”) and all 4 years there I was like a little sponge...soaking up and learning everything I could. I thought Cardiovascular/Thoracic Surgeons had stressful jobs but they are “Kindergarten Coloring” compared to a Neurosurgeons job. Whew!

Okay, please understand that the “Neurosurgery” element in this book is just that; an element, it is a very minute part of the stories. I appreciate the detail of the procedure’s because I am a nerd! The MOST amazing fundamental of “Gray Matter” is the power of forgiveness and prayer. I don’t want to “give it away” because I want everyone to read this book...I don’t care what your beliefs are or aren’t, I want YOU to read this book. I promise, it will have a tremendous effect on you. IF you purchase this book and disagree with what I am saying, you just let me know...I’ll send you a check and you can send me the book. A refund of sorts! I’ve laughed, cringed, held my breath with Dr. Levy and I have cried. Most importantly, I understand the power of forgiveness more than ever before. Dr. LaVallee thinks that I most likely have a type of VEDS but I haven’t been genetically tested and probably won’t be. I’ve yet to have a vascular incident but if I ever do, I pray that I am in California and Dr. Levy is close by! 

So, speaking of forgiveness. I forgive Dr. Amnott for sticking all those needles in me yesterday! I hope he can forgive me too, I drove after I took the valium. Shoot, he doesn’t need to forgive me as much as the poor tire I popped and that poor rim do. Yes, yes, yes, my blog reading friends, whomever you may be and wherever you are. DO NOT drive after you take Valium!!!!! If you do feel so inclined to do such a daft thing please heed this warning....When you see that you are about to hit a curb, please swerve to miss it instead of thinking “ooops, that’s gonna be a little bumpy”. In all honesty, hitting that curb probably had NOTHING to do with the Valium...I hit curbs often. I did fess up to my Doc. I probably shouldn’t have, but he told me not to drive on Valium. In my defense, that was last week, not yesterday. However he did say it (write it) emphatically, 3 times, so it should have been good for 3 weeks. He probably was laughing at me inside but he just said “NO more Valium”. Good, made that decision easy enough (read previous blog).

This morning I feel terrific! When I woke up I could feel that “saran wrap” sensation! You know when you cover a bowl in Saran Wrap you stretch it firmly across the top of the container? My lower back feels like the taut saran wrap. Ahhhhh. Let’s not confuse this taut feeling with hypertonic or stiff- this feels fantastic, not icky. I am still sore from the procedure but not much, we’ll call it a 4.5 on the Mark LaVallee pain scale. If you are interested in Prolo (GARY CORNMAN!!!!!) please let me know. If you are in the Hudson Valley area, I’ll introduce you to a great Doc, I’ll even hold your hand during prolo! If you are in the South Bend area, I can introduce you to a great Doc; I can’t vouch for the SB Doc in a clinical aspect but I know many people that can. I do know he’s a wonderful person and I also know he wrote a text book on Prolotherapy. I call him the “Prolo Pro”, his real name is Dr. Mark Cantieri. If you are anywhere else in the world and interested in this treatment, contact me and I’ll do some research for you and help you find a good Doctor. (*Disclaimer Prolo is not something to “jump into” with just any Doctor. Trusting just any ole Doc is not wise. I recommend “dating around” first before you commit.*) I am a big fan of Doctors of Osteopathic Medicine versus Doctors of Allopathic Medicine (Okay that’s a DO vs an MD). If you have EDS and you most likely do if you are reading this blog, GO TO A D.O, at the very least as your General Practitioner. 

So, let’s recap, I have been a bit wordy

-Read “Gray Matter” by Dr. David Levy

-Prolo Rocks- As Anne says “DO THE PROLO....” (Partial quote! I love you Anne!)

-Don’t just let any Doc do Prolo on you!

-If you have EDS please educate yourself about VEDS, if you don’t have the gumption, get in touch with me and I’ll share my minuscule knowledge with you. 

-D.O.’s do it better! Seriously, they even adjust you; they’re great at “Putting you in your place” (ha ha ha ha)

-Don’t drive if you have taken Valium and if you do, avoid all curbs....You don’t need to check it, it’s there!

-Read “Gray Matter” by Dr. David Levy

-Have a wonderful weekend! Make it a great day! Push through the pain, come on, I know you can do it!

-READ “GRAY MATTER” by Dr. David Levy!!!! Do it! 

Gentle Hugs! 

Ila 

I DID IT AGAIN!!!!! Prolotherapy number 2

So, I just got done with Prolo session number 2. I wasn’t as nervous today, thank you Jesus! I don’t like being nervous, that’s no fun, I like being happy and excited about life! 

My sweet and awesome friend Elisa came in with me and held my hand. Unlike session one, this one was a bit prickly, not really painful just a bit more uncomfortable. Elisa is not only a great friend, mom and wife but she is a greatDoctor too. I thought she might like the “educational value” of being there with me. Well, not so much, she didn’t look! She said she was just there for me. If you read this Elisa....THANK YOU! Now, next time I have Prolo (2 weeks from today) I am doing it friendless! I can do it!!! I am Ila, hear me roar. Ha Ha. I think I may try it without Valium next time too, I hate feeling drugged in any way. Don’t get me wrong, it’s fine during the procedure but afterwards I am a bit loopy...Wait, I need to say I am a bit loopier than normal. 

I am reading a book that I CAN’T put down called “Gray Matter”, it is written by a neurosurgeon that prays with his patients. (YOU MUST READ THIS BOOK, if you can’t afford it, let me know and I’ll buy it for you!) So, I know prolo is nothing like neurosurgery but instead of drugging myself, I think I am going to ask my Doc to pray with me next time and see how that goes. Prayer has immediate and long-term effects but 1. you can drive afterwards 2. you don’t feel icky and blahhh 

1. The effects last much longer than any drug.

So, what exactly is Prolo? Google it. I am just kidding! Prolotherapy is short for Proliferation Therapy and is sometimes known as “Sclerosing Therapy”. During a prolo session my doctor injects me with lidocaine and then he goes in a bit deeper and injects something called Dextrose. The Dextrose literally damages my ligaments and tendons. Well, if you don’t already know, when you have damage in your body, blood heals (keeping it simple) and your brain knows this so it increases the blood flow to the “injured” area. Hence, promoting healing. Now, typically, ligaments and tendons don’t get much blood flow but since they are damaged the body sends the great healing blood that way! Prolo also creates instant inflammation in the area being treated. It sounds NUTS but it feels so good. As my friend Katie says “It hurts so good”. 

I’m also very excited, my super duper Doc is gong to do some prolo in other parts of my spine next time. I’m keeping my faith that this is going to be the answer I have been looking for. 

On another note, this week has been a painful one and even some pains that I couldn’t explain. I’m a medically minded girl so I want to know why it hurts. My muscles have hated me all week because of subluxations and I’ve had atleast 20 from head to toe. ICK! I did get a great adjustment this morning and feel so much better. Let’s hope it stays that way for more than an hour! 

So, just for Anne, oh dear Anne. I didn’t cuss, I didn’t cry but I did try to grab the table once but couldn’t find anywhere to grab. Oh well! It went away quickly. Once again my dear friend, I did prolo.

I hope you all have a wonderful weekend! Mine is FULL of wonderful plans! Gotta run for now, I’m making pound cakes this afternoon!

Gentle Hugs,

Ila

POTS

Many people that have Ehlers Danlos Syndrome also have some form of a condition called Dysautonomia. Most EDSers that I know have been diagnosed with a type of Dysautonomia called POTS. No, POTS is not when you walk around with a pot on your head; it stands for Postural Orthostatic Tachycardia Syndrome. EDS is not the only condition that "brings on the POTS", there are many! Did you know that Astronauts suffer tremendously from POTS when they return from space. Hmmmm. I'd never thought of this before but on my bad "POTS Days" I am very Spacey! :O) Some of the "pros" call it "Scrooge Syndrome" and say POTS is caused by a small heart which (in their opinion)is directly related to lack of exercise and immobility. Well, in my case I KNOW they are WRONG WRONG WRONG! Whew! If you know me even a tiny little bit you know I have a HUMONGOUS heart and even on my worst days, I run around like Speedy Gonzales! 
I'll discuss this more in a blog later this evening once the boys are in bed. Just wanted to "throw something" out there to start contemplating! 
It's THANKFUL THURSDAY! Tell me 3 of the most RANDOM things you are thankful for today! :O)(Come on y'all, think up some good ones!)
Here are my 3 (Gosh, can I keep it to only 3?)
1. Old people, I LOVE to hug them and do things to make them happy!
2. The fact that my kids are so hilarious, they make me laugh everyday...without fail. 
3. Feet (it would be kinda hard to walk without them!)

Gentle Hugs y'all! We are off to Pig out on Pizza! 

Terrific Tuesday :O)

I happened across these and thought I'd share! Thank you ALL for the amazing feedback from the blog! I never realized how many people were "searching" for info and just another bendy friend to relate to! 

Okay, that's enough humor for today! If you haven't read Maxims "We goofed and now we are going to fix it" article, please do! HOWEVER, please be FULLY aware that some of the information given by the man they spoke with is ridiculously inaccurate.  Gee Whiz, you'd think if they didn't have a Doctor to interview about it they would have called someone incredibly intelligent to interview....Hmmm, someone like Me! 

:O)

Have a wonderful and blessed day!  

Magnificent Monday!!!

It is an absolutely beautiful day here in New York, Although I know some people don’t think so! It is HOT outside and inside at some places. One of my friends here is a Pediatrician and I just got a note from her saying that it’s 90 degrees in her office! Whew! Can you imagine all the sick little babies in there and now they will be sick and even grumpier! Poor babies and POOR Elisa! I’ll have it cold enough to hang meat when they come over tonight! 

So! Onto Monday’s Minute and my goals that I have set for myself this week! My “To Do” list of sorts!

1. Go to the gym 5 times. 2 days cardio and 3 days of mild cardio and weights. 
2. Do 5 pull-ups a day (hey, I am trying!)
3. Decrease my sugar intake and drink less Coca Cola!
4. Continue to stay away from the real and fake cigarettes!
5. Figure out WHY my hip is hurting like this...Other than I have EDS. I can usually figure this stuff out but not this one and it’s relentless! Booo you hip!
6. Keep my sanity once Andy leaves on Wednesday! 
7. If it stays this hot I’ll have to manage my time in the sun! My POTS (Dysautonomia) and to much heat don’t mesh well!
8. Drink 2 liters of salt water a day. 
9. Do a minimum of 10 nice and unexpected things for people. 
10. Tell 5 people (that I don’t usually tell) THANK YOU and how BLESSED I am to have them in my life. 
11. Try to drink 3 glasses of red wine this week (I’m working up to 4, per Dr. LaVallee). 
12. Park on the furthest part of the parking lot so I walk further. 
13. Smile more, give more hugs and laugh!

So, those are some of my “EDS” goals for the week. Some aren’t really related to EDS but I put them in anyway! 

I’m looking so forward to my visit with Molly! It’s going to be a great weekend! Can we fast-forward to Friday please? I'm also dreading my honey leaving, I miss him when he is gone! 

As for a prolo update for you “loyal followers”: I am doing well post prolo day 3. I have no pain or even discomfort from the injections. I tried to get Andy to pop my back last night and this morning and he said “I don’t want to hurt your prolo!” I told him to hurt the prolo, I am all out of whack. He won, no snap crackly pop  happening here today!

Have a blessed week and remember to SMILE! 

Simply Sunday

So today is “Simply Sunday”, it’s been a good day but a busy one! Last week was busy and I don’t feel like I have rested as much as I should this weekend! Although, Going full-blast is much more fun than resting. Right? 

I did well last week with my goals. I didn’t smoke the electronic cigarette at all, I drank less Coca-Cola and I went to the gym 3 times. I hoped to make it to the gym 5 times but that just didn’t happen. I did a great presentation on EDS and had a little epiphany  myself. I did nice things for people as usual and I did nice things for myself. Sometimes I get so caught up in trying to make other people happy and smile that I forget I need to take care of me. 

My biggest accomplishment last week was that I didn’t chicken out of Prolotherapy! I did it and it wasn’t as bad as I thought it would be. The procedure was a little uncomfortable but not excruciating. I guess a lot of people request Conscious Sedation for the procedure and that scared me! Well, it in no way, shape or form warrants that type of anesthesia, the Valium and Lidocaine worked well for me. Andy told me yesterday that he did not like me very much when I got home from Prolo, he said I was pretty “out of it”. I told him that was the Valium and he told me that I was like a “shell” or a “ghost”. He said “Your spunk drives me crazy at times but I love that spunk”. I got tears in my eyes! He’s so sweet! I did make it to our Cadet dinner on Friday night and as soon as we got home, I went to sleep on the couch. Other than getting up to eat breakfast for about 10 minutes, I didn’t move from the couch until about 10 on Saturday Morning. Once I got moving I was okay, I wanted to sit but it was very tender to sit, I wanted to lie down but didn’t want to feel lazy and I wanted to walk around a lot. I just went with the flow. My biggest accomplishment for Saturday was going to a track meet, I lasted about 2 hours. 

Today has been an insanely busy day. I got up early and went to church. I get pretty emotional at church so I came home and decompressed for 1/2 and hour or so. Then with the help of Andy yelling, I got up and cleaned a little, cooked lunch-dinner for 10 people and made 2 awesome banana puddings. Yummmmy! Some of our Cadet’s that we sponsor here at West Point came over and we had an amazing time. We played Taboo and that is always good for a few laughs! Oh! I also got my friend Molly’s ticket booked to come and see me next weekend! As far as how I feel... My back has been just a tiny bit tender today but hardly at all.  I have had some “un prolo” related pain that is driving me Nuts!!!! It’s in my left leg and just won’t relent. I’m going to keep trying to ignore it and I am sure it will go away. Having Prolo treatments might just break me of my “Ibuprofen Dependence” !

Now our “Cadet Kids” are gone, our precious boys are in the bed and I am worn out! I’m going to snuggle up to my honey for a few minutes and then I am hitting the hay! I will post goals and ramblings for next week tomorrow! 

Before I close, I want to send a “FEEL BETTER SOON HUg” to my friend Beth and to my Friend Molly. I know they are both having a rough EDS day! Sleep well my friends, tomorrow is a new day! Here’s to y’all! “Pain, Pain, go away and don’t come back another day!”  

Love and Hugs,

~ila~  

 So! I am a strong enough person to say this...I AM SUCH A BABY! I had Prolotherapy for the first time today and it was not bad. Dr. A said that I will probably be uncomfortable once the Lido wears off but right now I feel great! I’m a little tired because I did get a Valium before the “procedure”. I wasn’t nervous enough to warrant a Valium but I “jump” when I get stuck and we thought that might help. Don’t get me wrong, 5 days prior today I was anxious enough for Valium but today I wasn’t. Well, I wasn’t anxious and nervous until I got to the Doctor’s office and that was with Valium. 

So, if you are considering Prolo, I can honestly say that the procedure part is not bad at all. The worst part was when my Doc was mixing the injections and he told me I couldn’t talk to him while he was doing that. I think I actually made it a whole 45 seconds before asking if I could talk to him again. I did have my friend Natalie there with me incase I needed to squeeze her hand, I don’t think I ever even did that. She only yelled at me once for not being relaxed!

Here’s a fizzy water toast to wonderful Doctor’s that mean what they say and say what they mean. Those are the ones that truly care, the ones we trust to do things that scare the daylights out of us. A second toast to fantastic friends that we can count on to be there for us, even when they are stressed beyond belief and have their own stuff they need to be doing. :O) 

Life is GOOD and Prolo aint 1/2 bad!

Just for my friend Anne, I did it! You can never call me JL! I didn’t cuss at my Doc like you did, I did’t cry or even whine and I didn’t even grab the table for dear life. Be proud of me! I did giggle when I thought about our conversation! They were probably thinking “What in the world is she giggling at?” 

Mark (Dr. C), I know you read this too! THANK YOU a MILLION GAZILLION TIMES for the support and advice!!! I know a Doc, his name aint Bo but he is a “Prolo Pro”! 

I’m going to take a nap, we have a dinner to go to this evening and I am tired! 

Gentle Hugs!

Ila the Jumping Bean

It's that time again!

JUST INCASE ANY OF YOU CARE, AND IN THE EVENT THAT YOU HAVEN'T HEARD THE NEWS! 

Registration for the 2012 Learning Conference has opened. The Conference is organized by EDNF (www.ednf.org) and it very beneficial for anyone that wants to learn more about EDS and all his friends and family! This year, for the first time, CME's are also being offered. I learned a lot last year and best of all, I made some great friends!!!!! I'm not going this year, I am having a "Spa weekend" with some of those friends that I met at the conference last year! 

Please check out the conference website!  http://www.ednf.org/index.php?option=com_content&task=view&id=2163&Itemid=88889264

Gentle Hugs!

Your Bendy Friend! 

But You Don't Look Sick! GOOD, I'm NOT!

Define the word "Sick"...When I hear the word "sick" I think of fever, vomit, cancer, appendicitis or the flu...Anything where the body is a "host". I don't ever think about my crazy body being sick. I make it a point to tell anyone that asks me about EDS that I am "BROKEN", I am NOT "SICK". Don't get me wrong, on bad POTS (Dysautonomia) days, I can feel very sick, especially just before I faint!

In the past few months, I have come to understand that it is not always bad to be “broken.”  I know that I was born with Ehlers Danlos, it just never "kicked my butt" until 2009. A lot changed in my life when I started to feel icky frequently,  hurt like crazy, fainted often, and could not find any answers. I realized that I had to "pace" myself; there was WAY to much "junk" in my life. I realized that I spent way to much time with people that didn't really matter and doing things that really weren't important in the grand scheme of things. The day I met Dr. Lavallee and we talked about EDS type 3 and Vascular EDS, I was horrified.  I asked if it is likely that I have VEDS, he said "You show significant signs; I recommend that you live your life the best that you can. Ila, make sure that you always have your 'house' in order and that your life is right with God and those that you love and care about". Those words still echo in my mind. It was sobering to learn there is no cure for Vascular EDS; if you have it, you are going to die! Aren't we all going to die? Do we ever know when? Do any of us have a promise of tomorrow? NOPE! We are only guaranteed this very moment, right now! I know, it can be a scary thought, but it's called reality; healthy, sick, rich or poor, old or young; any moment is potentially our last. During an in-depth soul searching, I realized that it didn't matter if I did or did not have VEDS and "knowing" for sure (via genetic testing) would not benefit me. 

You are reading a blog of a girl that grew up in the Funeral Home business; aside from that, my Mother died when I was 13, my Grandmother when I was 17 and My Papa when I was 20...Death and mortality are not strangers to me. As long as I can remember, I have always been the person that forgives and asks forgiveness frequently. When I admire someone, I tell them frequently. I treasure the important people in my life. I say "Thank You" far to often, I say "I love you" without hesitation (when it's true) and I think hugs are sometimes the best medicine (especially if they "crack" your back). Don't get me wrong, it's not all sweet, I don't just say what I think or feel when it's positive... I always "tell it like it is" and I get along best with others that do the same. I believe that life is far to short for dishonesty and "going with the flow". I call a spade, a spade. I do choose to always use class and tact when speaking my mind. I believe"I am who I am" because of circumstances of my life (See above if you have already forgotten). I've never taken life or people for granted. However, after my first conversation with Dr. Lavallee, it hit me like a ton of bricks; somehow, someday, I AM going to die and buster, I better be ready! Whew, that hit harder than any "hell, fire, and brimstone" sermon that I had ever heard!

So many things Dr. Lavallee said to me that day had a profound impact on my life! I left there feeling like Tigger after gulping a Red Bull! #1 I had a diagnosis #2 I had HOPE #3 I had "some" idea of the challenges ahead of me #4 I knew that I had a great Doc that would be kicking my butt and holding my hand every step of the way! When I left that office, I wanted to do back-flips! I was thrilled to know that I am BROKEN, I am NOT sick! 

Over the past 13 months, I have made significant progress! I have quit smoking "real" cigarettes (396 times!) and I am working on kicking the "fake" cigarette habit! I work out more than I have since my gymnastics career ended 17 years ago and I am enjoying it. In the beginning I struggled with the fact that getting better was solely up to me. I quickly learned that eating right, exercising/strengthening and pacing myself are not options for me, they are requirements.  Most of all, I am learning how STRONG I am and how weak I have been.  

On a happy note, being "broken"  has allowed God to work in my heart and life, it has enabled the fragrance of His love pour into and out of me. Per human nature, our hearts and lives are like little fortified “castles” where self and ego rule. Until I was  broken there was little room for anything but my ambitions, and desires. I thank God for utilizing my "brokenness" to strengthen his presence and "kingdom" in my heart and life. My body may be "broken" but that's not all. I have been a christian since I was a child but I have never experienced the power of God in my life as I have in the past 13 months. I have been broken through repentance to experience the renewed beauty of God's Peace. Broken in weakness to experience the power of God's strength. Broken through suffering to experience the sweetness of God's grace. Essentially, Being Broken has made my life and heart for Jesus stronger than ever before.

There is no “cure” for EDS and I doubt they will find a "cure" in my lifetime; it can't be completely "fixed" either. I thank God for blessing me with 2 amazing Doctors; one who "understands", he's broken too; he's in Indiana, but only a phone call away when I need him. My local Dr (Amnott) is fantastic, he does everything he can to help me feel better and I have had a significant decrease in pain since I started seeing him. They are very different with their approach but they both motivate and inspire me, they both pick on me, make me smile and they both offer me hope.  The GREAT Physician has always known I have EDS, he made me this way! I have Ehlers Danlos and I thank God everyday that it does not have me! I am thankful for my amazing EDS friends that I have met on this journey. As my dear friend Molly says “It’s wonderful to have friends that ‘GET IT’!” I am grateful for my best friends Val (her hubby Matt) and Jeri that have heard the question "is this normal?" at least 2500 times and always answer. I am so thankful for my amazing husband that does his best to understand and my children that love me no matter how I feel! Actually, I am thankful for the abundant blessings that being "broken" has brought into my life thus far!  I pray the journey that lies before me is long, adventurous, fun,forgiving and fruitful!

Gentle Hugs,

Ila

P.S. What inspired this blog? I had a conversation today that provoked me to reflect on the significance EDS has had in my life and to reexamine my goals for the future. A few minutes following that conversation I turned on the radio, one of my favorite songs was playing: The Hurt and the Healer by Mercyme. I always cry when I hear that song because it makes me think about how God has always used every loss or “tragedy” in my life for his glory. It brought to mind my favorite “Ila-ism”...My life is a canvas, today is just a brush-stroke, all I can see today and the past. However,.God is my artist and he sees the entire masterpiece. I pray that God continues to bless and utilize this “Broken Masterpiece” so that I bring him glory in everything I do. 

Do you have EDS?

I started on this at the conference this summer and have slowly added to it! Thanks to Anne and Danielle for the inspiration!

If you can pick your nose with your toes, You might have EDS

If you have days when you need a nap to rest up from the effort of getting out of bed in the morning, you might have EDS.

If your body snaps, crackles, and pops,  more than Rice Krispies,  you might have EDS.

If your dentist ever gave you so much Novocaine that his thumb was numb, and you could still feel everything, you might have EDS.

If you laugh hysterically with Anne, Ila and Gary about “Laffy Taffy”, uhm, you might have EDS!

If breathing causes dislocations, subluxations  and pain, you might have EDS.

If you have been called a Klutz for tripping over a thread on the carpet, you might have EDS. 

If your best friend says you are more lax than a spaghetti noodle, you might have EDS

If your joints go out more often that you do, you might have EDS.

If your medical records contain the key words “hypochondriac” “depression” “psychosomatic”, etc...You might just have EDS!

If you go to Cirque Du Soleil and are offered a job, you MIGHT have EDS!

If you think everyone can “pray” behind their back, you might have EDS!

If you plan on your tombstone saying: “STIFF” for the first time ever, you might have EDS!

If you are used to spending 1/2  an hour popping yourself into place in the mornings, you might have EDS!

If you have explained that EDS is NOT “erectile dysfunction syndrome” to alteast 12 people this month, Yeah, you’ve got EDS!

If you have ever said “Oh yeah, you are almost there, push it harder”  to your Chiropractor or D.O. when they are doing an adjustment, you might have EDS!

If you live on drinking salt water, you might have EDS!

If you ever had to stop gymnastics training because you are just too flexible, you might have EDS!

If you have ever been told “subluxations are very painful” and thought “no, really?” (please insert explicative as so desired). You might have EDS!

If you love for people to hug you because it pops your back, you might have EDS!

If you can touch the tip of your nose with your tongue, you might have EDS!

If you can touch the tip of your elbow with your tongue, You might have EDS!

If you have searched for Gumby, in your family tree, you might have EDS. 

If one of the first things you notice about new people you meet are the veins on their chest, you might have EDS. 

Seriously! If your spouse says “Hey honey, let’s go to bed a little early!” and your response is “Only if you pop my back afterwards?”, You might have EDS!

You are sticking a What? Where?

I recently started acupuncture treatment and I like it a lot. I think it was my second treatment when my Doc said "I am going to do acupuncture on your ears". My internal reaction was "You are going to stick a WHAT? WHERE?"...Well, I didn't love it the first time. He inserted small gold "tacks" into my ear at 5 different "points" and told me they would stay 4-10 days. Well, I took them out after 18 days. The "procedure" was not painful, but I could feel those dadgum needles (Tacks) in my ears and that irked me! Well, about 10 days ago my knees were killing me and I went in to see him, he did the "AURICULAR ACUPUNCTURE" for the second time. Two of the tacks he put in actually felt really good, I don't remember the rest. Well, this time I have not noticed the sensation of something "odd" being in my ear, I have even been able to sleep on that side. The only time it has bothered me this time has been the few times I have tried to scratch my ear and that didn't work very well!

So, what in the world is "Ear Puncture"? The "real" name of it is "Auricular Acupuncture" and believe it or not, it's been around for hundreds of years. In Massage Therapy school, I learned reflexology for feet and hands, I liked feet best so we'll talk about them. In Reflexology, practitioners usually focus on the feet, hands or ears and work on just that particular part of the body during a session. "For Feet's Sake"! It has been believed for hundreds of years that certain "points" on your feet correlate to different parts of your body. For instance, the top of your big toe correlates to your head. Got it? Do y'all think I really believed that the first time I heard it? Heck NO! Well, it's amazing! A trained practitioner can actually "feel" the "imbalance" when they are working on your feet. So, what do we do then? Well, we work in that "spot" on your foot and then we apply pressure. A good reflexologist will continue to work on your feet and ankles in their entirety and then return to the "problematic areas" to apply pressure and give special attention. REFLEXOLOGY reminds me a lot of AURICULAR ACUPUNCTURE. 

Much like our feet, our ears are actually a "map" or "copy" of the entire human organism (body). About 60 years ago Dr. Paul Nogier, mapped the human body over the outer ear, after he noticed that the basic shape of the ear appeared as if an inverted unborn baby was placed on top of it. We now know this as the somatotopic representation - the bottom of the ear represents the head of the fetus, the feet are towards the upper part of the ear, and the body is in between. The Helix Curve (outer part of the ear)  represents the back of the body. 

Once we understand this, it's easy see that the elevated part of that area of the ear (the antihelix) corresponds to the vertebrae. The internal organs are contained inside of the ear. The lungs and heart are situated in the lower area (inferior cavum concha) and the kidneys, intestines and bladder are represented by the superior cavum concha. With reflexology, you have a 1/2 hour to 1 hour session, with "ear puncture" those tacks apply that pressure to those areas for 4-10 days on average! 

Oh, you want to know "WHY" and "HOW" it works? There are different "beliefs", one set of theory is "energetically" based and is originates from the Eastern part of the world. If you have never taken the time to read about Qi and energy, please do so, it is very intriguing! The second theory, typically known as the European Theory is far more scientific and well, "rational". I love learning about the human body and how we all "work", yet, I am intrigued by the Eastern philosophy as well. I am a very intuitive person, yet, I enjoy science, it makes sense to me. I probably fall somewhere in the middle of the road, maybe I am "EUrAsian" when it comes to medical practices. Ohhhhh, you STILL want to know "How" it works? I don't really know, but it works for me! It may not work for you but It's worth a try! If you need help finding a practitioner that does Auricular Acupuncture, feel free to send me an email and I'll research it for you. 

(This is my Disclaimer!) NOW YOU LISTEN TO ME! Please understand it is not a "miracle cure"! Used in conjunction with exercise, pacing myself and manipulation, I have had favorable results. Your Doc may not be as good as mine! If you are in the Hudson Valley area of NY/NJ, I'll give you contact info so you can make an appointment with my Doctor. No matter what Doctor you are going to see for  ANYTHING, please always get "references" from others...(Others with our EDS issues if you can). You don't need an expert in EDS, you need someone willing to help you and someone to understand. Drugs are not always the best answer!!!! Remember that!