Don't walk, don't run....Fly!!!!!

I had Prolo today and it was great, as always. I love that “stiff” feeling I have afterwards! For those of you that read this and don’t have Ehlers Danlos, stiff is a feeling that most EDSers have NO concept of! Today was fairly unusual, the procedure hardly hurt. I’m not sure if Dr. A did a different area or if I am just getting used to being stuck! Either way, it only hurt once…now that one time REALLY hurt, I actually squealed a little “ouch” and I don’t usually do that. It was quick fast and easy!

Today was my last prolo appointment at the Army hospital, from now on I’ll have it done in Dr. Amnott's new office. Dr. Amnott is retiring from the Army next week, he’s dedicated 28 years of his life to Uncle Sam. He’s joining an established practice about 15 minutes away. It sucks a little because I get to change insurance plans and they won’t pay for “everything”  and won’t pay for prolo at all unless we fight for it. 

If you have not given prolo a chance, I highly suggest you do. It hurts a little sometimes, it is expensive and it doesn’t work for everyone. If you are one of the lucky ones it works for, it is a blessing.

Prolotherapy is the miracle that helps my body stay assembled properly. Yes, it sounds intimidating, 50-80 injections where the needle much touch bone and it all happens in about 20-30 minutes. I am one of the lucky EDS'ers, I was never in the danger zone of being incapacitated...I have just always subluxed and dislocated 500 times more than any "normal" human being, it truly interrupts my busy life! Prolotherapy has reduced the painful events by 80%. I've always said "If you can't fly, soar! If you can't soar, glide! If you can't glide, run! If you can't run, skip! If you can't skip, walk! If you can't walk, crawl! WHAT EVER you do, just please do NOT stop!" Ehlers Danlos is tragic for so many people because they let it defeat them! I urge you to do everything it takes to get your body strong, I know it is difficult when you live in pain but once you get there, it's worth the journey! I used to ABHOR going to the gym, I found my groove and now I love it! My time at the gym is one of the most peaceful times of my day. Believe it or not, I get into my little "Zen groove" and go with it...it's not meditation at its best but it works for me! I've been told it is much easier for me to get into shape because I was a competitive gymnast for many years, I partially disagree. Yes, the dexterity of my muscles must play some part of my success. However, I choose to believe my success is from making a conscious decision that this disease will never "break my stride" and because of that, I do everything I can to stay healthy and strong. Yes, I even do prolo and that has boosted my strength to levels that were unimaginable to me just 2 short years ago. I won't stop here, I can not settle, I will continue my journey, I will learn, I will teach, I will accept and I will press on...Will you join me? Let's don't walk or run when we know we can FLY!

; 

Ila

I LOVE KATIE

Shortly after my EDS diagnosis I was playing online and came across a blog, the more I read, the harder I cried, the bigger I smiled and I knew I'd found a friend. KATIE. I emailed Katie, we started talking on the phone and via email, we finally met and a life-long friendship was formed. We laugh, we cry, we reminisce, we question, we dream! Katie inspires me tremendously, we both have a common goal....WE WILL NOT LET EDS or anything else STOP US...EVER! 

 Katie as a Zebra

Katie and Dr. Mark LaVallee

Do something wonderful for yourself, visit Katie's blog at www.lifeasazebra.com or

 CLICK HERE FOR KATIE

My First Date

Dating was never really my “thing”, I just wasn’t good at it. Usually the guys annoyed me to no end, they were just far too “gaa gaa” and always sent me running away screaming like there was a swarm of bees chasing me. I’ve been married for 9 years now to my wonderful husband. Yet, I went on a “first date” yesterday and disliked the thought of it, just like always! I was nervous and a little jittery, hoping for a good match, someone I could tolerate, at the very least.  Sound familiar? I knew it would.  Welcome to the frustrating and sometimes catastrophic world of doctor dating. We all vividly remember and tell stories of our  first dates…the anticipation, the nerves the hope that “he” would be the one you’ve been looking for.  When that dreaded day finally arrives you check your reflection in the mirror and take a deep breath, hoping this time you got it right.  Would he be supportive, caring and honest?  The questions swirl in your head like a Chicago snowstorm and your stomach has that sick, nervous feeling.  I am happy to report that my first date with this new specialist went well yesterday, he was annoyingly late, incredibly nice, thorough and understanding.  I think he liked me too, he even stopped me on the way out the door and told me that I have incredible energy and that I’d made his day.

So then what happens, when like me, you have found the Doc of your dreams and he looks at you one day and says “I have to send you to a specialist for this”. You know that feeling, your heart plummets into your stomach, you get that nauseous feeling, tears sting your eyes and you just want to yell “NO, I don’t need a specialist, I don’t want to go to another Doctor!” All because you know that once again, you get to explain ALL your WEIRD issues to yet ANOTHER person and you’re almost guaranteed that you’re going to get at least one very strange look, probably many.

Searching for the perfect doctor is frustrating, whether they are your primary doc or a specialist, and much like the Easter Bunny…he just doesn’t exist.  If your doctor doesn’t meet your needs or act like “he” even cares, if you don’t trust them immensely and if “she” angers you on a regular basis; I highly suggest jumping back into the doctor dating world.  It does take time to build a strong Doc/patient relationship but I can always tell on that very first “date” if this doctor is going to be the one. I don’t always listen to that “gut feeling” and that fault of mine has left me intensely frustrated several times.

I am probably different than most patients with a chronic illness. I say that because I don’t want sympathy, I don’t want anything sugar-coated, I try my best not to whine and I don’t like drugs. On top of that, I am mesmerized by the human body and have a hunger for knowledge. I have worked in healthcare and I read everything I can get my hands on…not just info pertaining to my disease. I don’t think I am a know-it-all, I like for my Doctor to be the Doc, they are far more educated than I but I do want to be a “partner” in my healthcare. I like Doctors that tell me “I don’t know” when they don’t have a clue and I like Doctors that really listen to me and make me laugh.  Geee whiz. I am surprised I have EVER found a Doctor that I like, believe me, there have been plenty that I have gone head-to-head with! Oh, I like that too, a Doctor I can argue with and still smile as I walk out the door.

I have been incredibly blessed with two of the best Doctors to walk the Earth…EVER. They are as different as pound cakes and pecan pies, but they are both amazing. One is very outwardly compassionate, just too sweet, he is by far the most soft-spoken and loving Doctor I have ever gone to or worked with in my life. He has Ehlers Danlos as well, yes, I am talking about Mark Lavallee. Dr. Lavallee inspires me to  live with this disease and not fight it. I haven’t quite figured out how he does it, but he ignites fires from the embers of hope that glow deep in my soul. When I have a bad day, I think about Mark and what he lives with daily and I know if he can do it, I can too. I am not his only patient that feels this way, I know dozens of others, we all love him dearly. My other Doctor is equally, if not more awesome, but in a totally different way. Y’all won’t know his name as well (doesn’t every EDSer hear the name Lavallee and their ears perk up?) he is amazing! My Doctor here in New York is named Doctor Craig Amnott. I knew the day I met him that “the search was over”.  Dr. Amnott is not soft spoken, if he’s upset, you know it and he is very compassionate but not very verbal about it. He doesn’t like it when folks whine a lot and he tells it like it is. In a situation when Dr. Lavallee would cry with you, Doctor Amnott would tell you to “dry it up and drive on”. It’s not that he doesn’t care, he’s just very realistic and rational. Whatever he’s saying, there’s no beating around the bush. I asked him one day if something was going to hurt and he said “no worries Ila, I won’t feel a thing!!!” He’s incredibly smart, very proactive and he truly cares about his patients, especially those that want to help themselves. Dr. Lavallee begged me to stop smoking and I tried, I really did and even cried when I didn’t because Dr. Lavallee wanted me to and I didn’t want to disappoint him. Dr. Amnott got onto me about it several times and you better believe I just QUIT. I’m a kick in the butt kind of girl! Dr. Amnott has helped me so much physically and we all know that carries over and helps mentally, emotionally, spiritually, etc… I want to be just like him when I grow up.

So, back to my date yesterday… As I was sitting in the waiting room for almost 3 hours and then another hour in the back, I was contemplating the rules of Doctor Dating. Let me share them with you!

Move Slowly

 Don’t just blab your entire medical history the minute he walks through the door. Establish a strong relationship before you decide that he’s the one.  First appointments are like first dates in that both of you will most likely put your best foot forward.  After a few dates, you’ll have spent enough time together to know whether to stick around.

He gives you the best he’s got…

 All doctors are busy, but once you’re in the office, good doctors will take their time. Making time for you means that he doesn’t leave you sitting in the waiting room while he eats doughnuts and spends ½ hour on Facebook. It means that your doctor will give you his undivided attention and really listen. In this relationship, you are in the driver’s seat.  You are the one who knows how you feel and just like in a real dating relationship, he’s not a mind reader.  Dr. Right will support and  empower you, not act like you are holding up his latest game of Words with Friends.

Check-up

Many people choose to Google their Doctor, I don’t, it makes me feel like I am violating them! Once I have met a Doctor, I will go to some of the Doctor rating sights and write a review about them and I try to be very objective. If I like and trust my Doc, I really don’t give a flying fruit loop what some stranger says about them online. If I have concerns, I’ll ask them about it.

He Has The Affection Connection

Being blessed with a chronic illness can be stressful! We are very unpredictable and the sudden appearance of pain and swelling is common.  Dr. Right won’t get spooked by the fact that you are a conundrum.  Just like being in a relationship with the one that always makes you feel safe and secure, Dr. Right will make you feel comfortable enough to talk about the pain that’s everywhere, your fears and your anger at this crazy disease!

Don’t forget his family!

 When you know it’s time to toss “The Idiot’s Guide to Dating”  because you have most definitely found Dr. Right, keep this in mind: you’re connecting with the whole family, which for a doctor means the office staff. I like to call them the gatekeepers and trust me, if you piss off the gatekeepers you will become an outcast of the family. Be nice to them, they have stressful jobs and they usually do the best they can. I know great Docs that have lost patients because of their staff. If someone is truly rude regularly, talk with your Doc about it, maybe he can guide them in the right direction.

He is NOT God…

I know, when we find Dr. Right we put all faith in him as a Doctor. Please be rational about this and don’t ruin a perfectly good relationship because you are being silly and putting Dr. Right on a pedestal. Doctors PRACTICE medicine! Do you read me clearly? DOCTORS PRACTICE MEDICINE!!!!! Even Dr. Right is not infallible, he is going to make mistakes and that is not only okay, it should be expected. Doctors are also NOT omnipotent, they don’t know everything, especially what you are thinking or hiding. Please be completely open and honest with your physician, especially once you have found Dr. Right. If you don’t share what is going on with you, how can they really help?

-on another note! DO NOT LIE TO YOUR DOCTOR, they are NOT stupid people! A friend of mine asked me this week; “you know Dr. so and so well, do you think he stalks me on Facebook?” When I asked her WHY she would ever think that she said “because he always calls me out when I lie to him, I just don’t know how he does it!” Okay folks, I haven’t been to medical school lately but I am pretty sure they have some type of instruction in body language. Do you realize that when you communicate, less than 30% of the message you are conveying is done verbally? HELLO! If you don’t understand what I am saying, let me put it bluntly, don’t lie to your Doctor, it makes you look very stupid because your Doctors know when you are being dishonest. Don’t think you can get away with it, you can’t control your body enough to fool them. So, don’t lie to anyone, ever but especially the person you have entrusted with your health.

Doctors Don’t Bite….not hard anyway…

Your Doctor does not care if you forgot to brush your teeth, put on pretty underwear,  or forgot to shave your legs. Don’t apologize to your doctor about stupid things, you are wasting your breath and her precious time. Your stinky breath and prickly legs are the least of their concern and they’ve probably experienced far worse. Be confident when you are with the doctor and if you aren’t feeling confident, fake it. I can guarantee that if you exude confidence and self-assuredness, all of your dates will go much better, for you and the Doc.

There are probably other random rules that I am forgetting, we can talk about those later. Just have a cup of common sense, 2 tablespoons of patience, 2 cups of sincerity, 4.5 cups of respect, 1 pound of determination. Combine well, and watch closely….your courtship will be happy and long-lasting!

Prolo part 3 and this weeks update

I didn’t blog for a week, I thought about it but I’ve been super busy. I had a couple of rough days this week that were NO fun at all. It always amazes me how my back can hurt so bad for a couple of days and then I wake up one day and can’t even feel my back. I won’t complain! I did wind up going to the Doctor for my back on Wednesday, I just couldn’t take it anymore. He adjusted my back, did acupuncture and sent me home to take Advil. It slowly got a bit better and by Thursday morning, my back felt wonderful! 

PROLOTHERAPY!!!!!! Wooo Hooo! I had round 3 yesterday with no hand to hold and get this, NO Valium! I held my hair. It wasn’t peachy but it wasn’t bad at all. Dr. Amnott focused on a different area yesterday, my thoracic spine, he did a few injections in my lumbar spine as well. I would love to give you a number on the pain scale but that just doesn’t work for me! It didn’t last long enough to make a judgement and it’s hard to “scale” and acute discomfort like that when pain is usually chronic. Agree? It’s almost just an annoying discomfort, albeit a prickly one! When I hopped onto the table yesterday, I looked at my Doc and said “I’m shaking”, he smiled and said “It’s okay Ila, I’m not!” Priceless!

Okay, so is it time to be honest here? I don’t want to scare anyone! Once the Lidocaine wore off yesterday I hurt quite a bit. I kept telling myself it’s a good pain, it’s a good pain, it’s a good pain! I’m not yet convinced! Now, let me say this, it’s not as bad as the EDS pain we have, at the very least, I know this will go away and really is a “good pain” for my body. EDS pain is a very “deep” pain. Come on y’all Bendy Friends, you know exactly what I am talking about! This is not a deep pain, actually, if I am still, I hardly feel anything. So far, this morning, I hurt a bit when I move. When I first lean my back on anything, it is very uncomfortable, I may be a little bruised as well. I can attest to this, it’s nothing like the “EDS” pain I had earlier this week in my lower back, nowhere near the nauseating, relentless pain we sometimes get. 

So, what should you make of all this? Usually I’m bouncing off the walls again by day 1 post prolo. Each area of our body is very different and will react to treatments in various ways. I can handle a couple of days with this type of ache, no problem, YOU can too! Let’s also recall the very essence of prolotherapy! When the proliferant solution (Dextrose in my case) is injected into the ligament, it fools the body into thinking that a horrific injury has taken place. This causes the resident cells to send out a SOS to the fantastic FIBROBLASTS locally and throughout the body. The fibroblasts throw on their collagen capes and zoom to the injury. Once they arrive, they waste no time in beginning their job, they have new collagen to make and they work tirelessly for weeks. They aren’t making scar tissue dear readers, they are making NEW COLLAGEN!!!!! Granted, those new collagen fibrils are probably defective, just like their ancestors but that’s okay....They are still 40% better and stronger, at the very least! NO WONDER I’m sore this morning! I got stuck 4289 times yesterday and that’s the least of it! My fibroblasts are in a frenzy, fixing my funky flimsiness! That’s a pain I am happy to deal with! How about you? 

Very Gentle Hugs, 

Ila