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

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

Continued....

So, the wait was on, I was waiting for Dr. Lavallee's staff to call and set up an appointment for me to see him. They called in January, I'll never forget that day. We were in Memphis for Andy's best friends wedding, that would make it mid-December that they called. I was so disappointed when they set my appointment for April. I remember thinking "I don't want to wait until April to have answers". Well, I decided that I had to be patient! The Heinz commercial used to say "The best things come to those who wait"! In February as I was filling out paperwork for Dr. Lavallee, I called to ask a question. I spoke with his nurse Josh and he told me that I could actually come in the second week of March, I was so excited! 


I was (am) so sick of calling my best friend, Valerie, and her husband Matt and asking questions about what they "think" might be wrong with me. The past few years have been filled with countless phone calls that many times consisted of nothing more than questions like "do you think this is normal?" and "How do you feel when you wake up in the mornings?" You know, probably the normal questions that people that know something is wrong but don't know what ask. Valerie, like me, has a degree in Biology and Chemisty (but she's a heck of a lot smarter) and Matt, her husband is a nurse. Matt's not just any nurse, he's one of the super nerds that we all hate! You know, they read something one time or just merely sleep on the book and retain all of the information for their entire lives. When Dr. Straniero mentioned EDS to me that day in his office, I called Val and Matt and they immediately started to research. When Val called me back she was blown away "Ila, this explains you to a T, I think they wrote this description about you". That's when I kinda "knew" I had EDS, yet, I had no clue. 


My life is a very interesting one, people that don't know me or my family situation, those outsiders looking in, may call it dysfunctional...I call it BLESSED! I'll expound on this on my next blog, it is very interesting, so don't miss it!


The reason I bring up my "life" as being very interesting is because I believe that God puts people into our lives for reasons that we can't even imagine. I met my biological father when I was 16. My maternal grandparents adopted me at birth, I didn't meet my "father" to find a Daddy, I already had the best Daddy in the world, I called him "Papa". I have always been a curious person, I like to know the answers and I love to investigate to find them. Research is on the top of my list as things I love to do! Well, we found my "father" and I met him the day after Thanksgiving in 1992. He is an interesting fellow to say the least and until this day I have very little contact with him. When I met my father, I didn't necessarily fall in love with him but I instantly fell in love with my "Stepmother" and with my 1/2 brother. My Stepmother's name is Betsy and we just had a "click" from the second we met. I always tried to visit Gerald (my father) when I knew Betsy would be there. Betsy is a Doctor, so she was often on call or busy with patients. In 2000 I called and talked to Betsy one night and she told me that she divorced Gerald and I was so sad....I didn't want to loose Betsy, I loved her more than I ever even let her know. 


Well, about 2002 I would call Gerald and ask him how I could possibly get in touch with Betsy and he never cared to share that information. He was to busy bad-mouthing her and talking about how crazy she was. I looked and looked and we moved to Europe for 4 years in 2005, I just gave up. When we got back I asked him again and he said she was in Washington State, I scoured Washington State and no Betsy. Well, one night a few months ago, I was playing on Facebook, where I had looked numerous times before and I found her. I sent an email, realized before she even got that email that she was still in Florida and I could not help but let my fingers do the walking. I called Betsy with tears streaming down my little face, I just could not hold back the emotion. When she answered and heard that it was me, I think she felt the same way. That night we talked for hours, catching up and just being giddy that we were on the phone together! Toward the end of our conversation Betsy mentioned that she lives in excruciating pain and I said "Betsy, what in the world?" I about wet my pants when she said "I have Ehlers Danlos"! I squealed "I do too!!!!" and she whispered a calm "I know". "You what???" I asked! She told me that she was 99% sure I had EDS the day we met and my father and I excitedly shared our "circus tricks" that we could both do because of hyper-mobility. Gerald has EDS as well but his is asymptomatic, lucky man! So, Betsy and I talked about EDS for a long time....She talked, I listened! Betsy is an incredibly intelligent woman and compassionate Doctor. I was just so thankful that I had someone that I love so much that could relate to me and me to her. 


Even talking to Betsy and hearing her tell her EDS stories and experiences did not prepare me for what I was about to learn. 


To Be Continued in #3.....

Hello, I am Ila and I have EDS

Hey y'all! Welcome to my blog about my journey with Ehlers Danlos Syndrome. This is a disease that is so little known, when I type "Ehlers Danlos" I get a misspelled word alert! That's quite alarming!

 

I have always been EXTREMELY double jointed, until I had our first child, I could lay on the floor on my tummy, arch my back, throw my head back and suck my toes. Yes, I could make my body into a circle! I was always called bow-legged and have been told thousands of times that I have no bones and that I was as flexible as a cooked noodle. 

From the age of 3 until close to 20, I was an avid gymnast. I loved gymnastics and my coaches were all so amazed what I could do with my body. My flexibility actually hurt my gymnastics ability a lot. Literally! I always seemed to get hurt on the balance beam and I was terrified of that thing! I hated beam sets, I knew I was going to get hurt. Finally, when I got hurt the last time, Papa let me "give it up". Whew! I never stopped tumbling though! I have always been the person to do cartwheels or back flips when excited and I do like to do my tricks! Tricks? Yes, I can do all kinds of weird things with this oh so stretchy body of mine and it feels great to do them!

I never knew that my double-jointedness/hyper-mobility would cause any issues or that any issues in my body caused it. I just thought it was the way God made me and that it was just a little bit more about Ila that made people say "girl, you are 1 in 1,000,000! Other than having actual injuries, the first time I remember being in random, extreme pain was when I was about 22. I was dissecting a cat in an anatomy class and when I started to look up from the cat, I could not lift my head. It was excruciating and stayed that way for almost a week. I saw several doctors, one wanted to do surgery and I walked out. I finally saw a chiropractor in Augusta, Georgia that explained to me that my Atlas and Axis were turned and dislocated at a very odd and dangerous angle. She didn't adjust me then, I did therapy with her several times, relaxed in Epsom Salts several times a day, took loads of Advil and one day it was just fine. Just like that pain came, it left. 

My next episode came years later, we lived in Heidelberg, Germany and I was the Director of Customer Service Training for that region of Europe. Andy was in Iraq for his 3rd trip to the Sand box and our oldest son was 2. One day my ribs started hurting, it was an odd pain, hard to breathe and I could not get comfortable. After I had everything from my brain to my sacrum scanned, poked and prodded, I was told that I was crazy! We already knew that but I knew something strange was happening to my body. My boss told me to go to her massage therapist and I politely declined. I am a licensed massage therapist and I was convinced that the massage from her therapist would be pretty bad, just like most others. Well, I finally broke down and went to see Ricky Welch, her massage therapist. Folks, I was so wrong in prejudging this man, he was and is AMAZING! Ricky massaged me and by the end of the 1/2 hour massage, every joint in my body had been adjusted. Ricky told me that I had 6 discs that were "out" and 2 ribs that were causing my major discomfort. I saw Ricky once a week until we moved from Germany to Belgium. I told him it was his job to "keep me in line"!

After we had our second son, in 2008 I started to notice some very weird things but they didn't rear their ugly heads very often. I remember sitting on the porch one night, talking to my dear friend Jessica and asking her; "Do your toes ever tingle for no reason?" She laughed and said no. Then I noticed that I would get very dizzy sometimes when I stood up and I would be freezing cold but sweating like a whore in church. I am a health buff and love to study and learn about the human body so this really perplexed me. I chalked it all up to Post- baby hormones and loosing 75 pounds in less than 10 months. It did bother me that I was so tired all of the time and to hear Andy tell it, I gave a new meaning to the word bitch. 

When we moved back to the states for Andy to go to graduate school, I was so happy to be back in America! I won't tell the long, nightmare story here but we wound up in a house that we rented on Craigslist from a very reputable person (yeah right) and it turned out really bad in many ways. The house was loaded with lead, arsenic, mercury and cadmium and the people that owned the house had construction done while we lived there. Well, our oldest son got really sick from the house and I did as well. Our illness started almost immediately after we moved in, less than a month from moving in, we were both up to our ears in feeling yucky. Our son developed psoriasis on the backs of his hands and in his scalp so bad that I could not find a soul to cut his hair. He would wake up some mornings with his face covered in blisters that resembled chicken pox. As for me, I had excruciating headaches regularly, something I had never experienced. I was unbearably tired most of the time and the dizzy, sweaty and cold episodes became quite regular. I started to get random sores in my mouth and nose and I felt like crap most of the time. 

I told my Primary doctor about this over and over. I would beg her to please do blood work, tests and anything else that might help us know what was wrong with me. I was told again and again that I was just depressed, that doesn't need blood-work and that I had 2 little boys, I should expect to be tired. I take Adderall for ADD and she started me on Cymbalta for depression. I told this doctor that I was not depressed, that I was sick and she didn't believe me, she'd up the dose of depression meds. Well, we found out the environment in the house was what was making Cole sick, so we moved. AHHHHHH! We moved! It  was great! We found an amazing house, way south of town, with great landlords, lots of room, a fantastic in ground pool and no worries of yuck where we live! When we moved out of the house, Cole, our son, was physically better in less than a month, his skin condition cleared and has never returned! Well, I started to get sicker and sicker, the joint and back pain was excruciating, the fatigue was unbearable and those bumps would just appear from nowhere in my mouth and nose. I would go to the Dr. for those every time they would appear because my Dr. said they were MRSA and that alarmed me because of our children. I should have listened to my best friend Val when she and her brainy husband Matt would say "THOSE ARE NOT MRSA". But, I only listen when I want to and I guess I didn't want to listen. After all, what else could cause the odd bumps!

Well, it just so happened that I got the "bumps" one day when I could not see my primary care doctor and was worked in to see her partner. I loved him right away, he reminds me of my cousin Milton that is also a D.O. Well, he asked me what was going on and I said "these bumps that SHE calls MRSA are back so I guess I need more Cipro. Well, Dr. Wonderful Robert Kaiser took one look at the bumps and said "I'm ordering blood-work, that's not MRSA". I was SOOOO excited. We talked about the fatigue, weight gain, joint pain, dizziness and just about everything else that had bothered me in the past year or so. When the bloodwork came back, he referred me to a rheumatologist because my ANA test came back positive. My rheumatologist is a great man, Dr. Nick Staniero, I think he looks like Tim Allen and he is just as funny and fun-loving. The first day I saw Dr. Strainero he said "you may have Lupus, we'll have to do another panel but I am positive that you have Ehlers Danlos Syndrome so I am going to refer you to Dr. Mark Lavallee." He told me that the EDS may be causing ALL of this! Well, the blood work came back long before I had my appointment with Dr. Lavallee and it did confirm that I have Lupus. My ANA isn't sky-high but my Anti RNP was pretty elevated. Dr. Straniero told me to see him in 2 months, start the Plaquenil and to consult with Dr. Lavallee, he promised that I'd really like Dr. Lavallee...I wasn't so sure. I just knew I was about to be sent to ANOTHER Doc that thought I was some crazy, whining, nut that suffered from hypochondriasis. After all, that is what my family doctor, along with my Aunt had convinced me of. 

TO BE CONTINUED...