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

Some Photographs.

OI- One of EDS's closest family members! 

I love this quote! I am so thankful that my Doctor doesn't
try to give me a useless pill to try and cover up my symptoms
that can not be covered!

My dear friend Heidi. I wish I also knew her as a Dr but
maybe I'll have that opportunity someday! 

Dr. Rodney, he is the head of the Rheumatology Research Center
In England. I was so honored to spend some time with him and learn learn learn!

Some of my new friends from the conference.
Front: Me, Sweet Molly, Back: Gary-my friend that lives about 20 minutes away!
Let's not discuss the girl in the neck brace! Amazing Paula and Troy Winkler!

Me with Troy Winkler. He's an amazing person!

Me dealing with some issues for Miss Molly!

My dear friend here in NY, Elisa. God bless her for
listening to all of my weird stories, EDS and otherwise! Also with my faux sister-
In-Law, Christina Arce Bagaglio.

The man that keeps me going! Thank you Andy,
You are my biggest fan and I LOVE you!!!

I can still hang!

My Aunt, one of my biggest inspirations. She has severe,
debilitating Rheumatoid Arthritis. You think it stops her? NO WAY!
We talk daily, fight occasionally and love unconditionally. 

I am going to be featured in a poster for EDS Awareness. This is one of the photos,
sorry, they haven't been edited yet. Once they are, you'll only see joints....Hopefully they will
never know it's Ila! 

So, It Has Been A While!

So! It's been a while! When I said I was feeling "overwhelmed" with my EDS diagnosis and grasping it all, I was not kidding! I went through a very tough time just before we moved from Indiana to West Point, NY. Once we moved, I had an even tougher time because I wasn't surrounded by my EDS friends that lived nearby! I attended the EDNF conference in Baltimore last August and just so happened to meet a "local" EDS friend here in NY, Gary only lives about 20 minutes away in New Windsor. I think God knew I needed an EDS friend nearby! The conference was amazing, I met so many wonderful people, Doctors, EDSers and Researcher's alike. My new acquaintances range from a performer on Broadway to a Grandma from Korea and many folks with different walks of life in between! I even got to meet the amazing Dr. Blair Grubb and his super-amazing wife! I met a lady that Dr. Lavallee had spoken with me about, her name is Heidi Collins. Heidi is a Physician in South Bend, she and he children have EDS, her Mother and Grandmother did as well. I also got to see Anne, we shared a room together and spent the weekend laughing until we hurt! The EDS conference in Baltimore really helped to end my "FUNK" that I was in. 


When we first moved to West Point, a friend of mine recommended a Dr. to me, she thought I'd love her. I knew the first day I met her that I liked her but I also suspected that she was not the Doc for me. The second time I saw her, I like her even more but then I never saw her again. I always had to book with her NP because she was overbooked. Well, let me tell you, I did NOT like that NP. The first time I saw her I asked her if she got her degree at Walmart, she was not happy with that at all. The second time I saw the NP, I apologized that I asked if she got her degree from Walmart and told her I was now convinced that she "found" it at the Goodwill store. Geeez, she has to be the MOST incompetent health care professional I have ever met. I stewed about it for a while and then asked my friend that made the first recommendation (she is also a Dr) to make another one. She said, well since you have stopped smoking, you can see Dr. Amnott. So, I wrote him a note and asked him if he thought he could deal with me. 


I was REALLY nervous about going to this Dr. Amnott guy. I'd heard from a few folks that he was just incredibly blunt didn't sugar coat a thing. Well, I'm from Georgia and that's scary to me! I admire that quality in people and I am very blunt and honest as well but I have never had a Dr that was just BLUNT....I have worked with a few, some good, one bad! Well, I met with my new Dr. and knew that I was in the right place with the right Dr. RETIRING? What? Just my luck! Dr. Amnott is retiring from the Army in May, I bet he's got the exact number of days he has left but I haven't counted; it's not very long. Dr. Amnott is a D.O. and if you know me very well at all, you know my philosophy on Docs is that D.O.'s do it better. Please, no offense to my MD friends and family. 


Dr. Amnott is different than any doctor I have gone to, he not only practices medicine and manipulation of joints, he does acupuncture. I've never been a "needle-a-phobic" like my husband and oldest son but I do have an issue with people touching my back. I realized my "jumpy, cringe" problem when I was in Massage Therapy school, when anyone touches my back, I not only jump but I almost cringe as well. It's odd, I know. Well, that is my only "issue" with acupuncture, he calls it "anticipating" and says that when I anticipate, it makes it more uncomfortable. So, I am trying to work on this a lot because I want to love the modalities of medicine that are beneficial to my body. Dr. Amnott also does acupuncture in my ear, I hated it the first time but the last time he did it, I hardly felt anything and the needles have been in for a week. I can really tell that the acupuncture is helping me and I am so grateful! I had it done today and I didn't jump, cringe or anticipate it as much and guess what? It really almost felt good. 


Manipulation has always been one of my favorite things. I LOVE IT LOVE IT LOVE IT, even when I am only mildly "subluxed" or "misaligned", it still makes me feel so much better...even if I don't crack a smidgen. I manipulate myself numerous times a day, I have to or wouldn't make it through most days but it's so much more effective when someone that knows what they are doing does it. However, I do hate that manipulation is very temporary for me, usually less than an hour....I usually scoot right back out of place.  


My newest adventure begins one week from today...(sit down Katie), I am going to have Prolotherapy done. I am nervous and I know it's not going to feel good but I really do think it will help me in the long-run. We EDS people supposedly have a "super-human" pain tolerance. Right? Yikes! It'll be fine, I have to work on controlling my reflexes this week so that I don't jump, cringe and anticipate! I'll keep y'all updated on the prolo party! Katie, come and go with me please! Maybe next time right? 


Finding a Doc that is so amazingly wonderful makes me feel a little guilty. I think I have been to see this Dr more times in the past couple of months than I have any Dr ever. My primary Doc in  Indiana was hilarious but she was always atleast 90 minutes late and she didn't believe me for so long when I would tell her that something was "wrong" and would beg her to send me to a specialist or investigate further. I'm lots of things but stupid is not one of them, I know when something is not right with my body. I usually see my Doc now about every 7-10 days and as I said earlier that I have never been to a Doc that much. I am so blessed that I found someone that is helping me and not only that but someone that inspires and motivates me to help myself. I had prayed and talked with God extensively about him leading me to the right Doctor, it took him a bit to decide on the right one but he answered my prayer, just like always! Thank you God, you haven't let me down yet!


I did try Physical Therapy here but decided that I don't necessarily need PT (unless Terry is involved), I need a gym! Other than a gym, I need to eat better, quit smoking my e-cigarette, drink more water and less Coke. I also need to blog more, it really helps me deal with it all! I need to utilize my faith more...you know what I mean, question less and jump more! I need to set daily, weekly and monthly goals. I am that girl that my Mama warned me about, I want it all right now! I love that about myself but it also drives me crazy, I get overloaded very easily. 


So, in a very long-winded explanation I have let you know that my pain is being managed very well. When I left the Dr today I realized something, I have not had one of my killer headaches in a couple (maybe a few) weeks. That, my friends, is simply incredible! Yippppeeee! I am not by any means pain-free but I am a good 25% better than I was 3 months ago. NOW, pain sucks but has never been my biggest issue. My least favorite friend of Ehlers Danlos is Dysautonomia. I seem to have "flares", it's never completely "gone" but sometimes it is far worse than others. I absolutely hate the dizziness, tachycardia and most of all the fatigue. If you have EDS or Dysautonomia, you know the "tired" I am talking about, you hit your brick wall for the day but you only went from the bed to the shower! The kind of killer "sleepy" where you feel like you need toothpicks to hold your eyes open and that's after you thought you had 8-10 hours of "good" sleep! It's so frustrating and discouraging but this to shall pass! My Dr. is pretty perplexed by it as well and I am having a sleep study done in the very near future. Please pray with me that we'll solve this mystery soon! I have way to much spunk to be tired so much. Wait, I have an idea for a new song....(air guitar please!) "TIRED to the bone". 


Another NY update, Cole has also been diagnosed with EDS type 3. For those of you that aren't my friends or family, Cole is my oldest son, he turns 8 in about a month. He's a great kid, so smart and sweet like his Mama! I'll update on that as well. 


So, I'll update more on our adventures later, just wanted to give a little (long) overview of what is currently and has been going on in the world of EDS medicine and well-being for me. 


Gentle Hugs!


Ila