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
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