A JOURNEY WITH NO REAL DESTINATION

In December of 2010 I was diagnosed with Lupus/Mixed Connective Tissue Disorder. In March of 2011, I was diagnosed with Ehlers-Danlos Syndrome, type 3. The MCTD/Lupus Dx was incorrect, they should call EDS "ACTD", (All Connective Tissue Disorder)!
Since my Ehlers-Danlos diagnosis, I have read a few wonderful blogs that have inspired me and touched my heart. One blog brought me to my knees; I cried, my heart broke, I laughed, I smiled and I identified with this Katie's story. Reading her journey made me realize that I wanted to share my own.
Details are not something I spare and I have never been a girl of few words. I hope I inspire you, educate you, motivate you and touch your heart. I hope by writing this, I learn, understand and accept my new journey...Is there a destination?

Monday, June 4, 2012

ZZZZZZZzzzzzzzzzz


ZZZZzzzzzz. Did you hear me snoring Saturday night? I bet you didn’t because I wasn’t! I had a polysomnogram done on Saturday night and all day Sunday I had a test called a “Multiple Sleep Latency Test”. I am happy to report that I did not snore at all during either study,  however, I did talk in my sleep and was very embarrassed about it! Oooops! Leave it to me to talk non-stop, even in my sleep!
I was a bit apprehensive about this study, I thought I would not be able to sleep with all the wires hooked up to me. Well, I was wrong, I slept. I haven’t gotten the report yet but the guy that did my Saturday night sleep study said that I didn’t have any snoring or apnea but I did have a good bit of movement. My super-awesome tech on Sunday would not tell me much of anything but that’s okay, I’ll find out soon enough! I told my husband that I really liked my Tech from Sunday, her name was Stephanie and she is great! She’s the only person I have ever met that would talk to me for 2 hours and then say “Ila, you need to go take a nap for 15 minutes!”
I had a sleep study because I am really tired a lot, especially in the morning. My cousin Melinda said “You are tired because you NEVER stop”. Well, that probably has something to do with it but just imagine how much more I could get accomplished if I woke up bright and refreshed? It would be amazing! I hate it when I feel lethargic, I’m like the Energizer Bunny, I like to keep on going and going and going! Much like every EDSer I know, I do hit that “Brick Wall” occasionally and that really bugs me. I never see it coming and I can just be bouncing through my day and BOOM! It stops me right in my tracks. It may be at 11AM, 3PM, 8PM or anywhere in between but when I hit that wall, I must stop and rest. You know, it’s that feeling where everything sounds like the girl on Snoopy, but in a tunnel, you get a little dizzy, well a lot dizzy and you break into a cold sweat. Thank goodness that doesn’t happen often, I like to be in control, not some freaky, misunderstood reaction in my body. To tell you all the complete truth, since I started going to the gym regularly, it hasn’t happened. Over the past 6 months or so, I have really focused on making my body stronger and it’s been great! My friends, I don’t have a choice and guess what? NEITHER DO YOU! If we don’t beat EDS it WILL beat us. Now I don’t know about you but I’ve got the boxing gloves on and I know who the lightweight champion is in this fight!
If you have any questions about sleep my sleep study, let me know and I’ll answer as best I can! It wasn’t as miserable as I had anticipated but it was long and a bit boring before I made friends with Steph the sleep tech….after that it was a breeze!  Steph and I ordered food yesterday afternoon and sadly enough, I got food poisoning! Yes, today has not been a fun day. I’ve just been pushing fluids like crazy so that I don’t have a potsy day tomorrow. I’m not sure how well that works when your tummy is this icky but we shall see tomorrow~





On another note, I haven’t blogged as much in the past few weeks as I would have liked to but I’ve been pretty busy. So, let me do a quick update. My most recent prolo session was 10 days ago. My Doctor retired from the Army and is working in the “real world” now, so we have to have a “new patient appointment” to decide what our course of action is going to be. Have I told y’all that I love Prolotherapy? Just checking! Even more, I love getting adjusted and I missed that this week too. Let me clarify something here for those of you with EDS. Please do not just let any “Joe Blow “ adjust ANY part of your body. Manipulation is a very “touchy” thing with EDS patients. You don’t want to go to someone that is going to hurt you any worse. DO NOT let anyone adjust your neck!!!! I had my neck adjusted several times by a Doc that I used to work with and heard a horror story (from him) and never let anyone adjust my neck again. My neck is a problem area for me anyway and I have had massive injury there. I hold my cervical vertebrae in high regard and just don’t trust folks to get anywhere near my neck when manipulation is involved. Well okay, I do let my favorite Doc adjust my neck. Make sure if someone adjusts your neck it is a VERY GOOD D.O. not a chiropractor, not an M.D, not your friend Sally, not your husband or wife. THIS IS YOUR NECK WE ARE TALKING ABOUT! Be careful with adjustments anywhere but I’d say your neck should top the careful list!
I’m having a very big debate with myself on whether or not to have genetic testing done for Vascular. If I do have it done I’ll never tell the results. Have any of you struggled with this decision? Are there any of you  that have what they term as “severe type 3” that have been tested? Typically “overly hypermobile” type 3 EDSers don’t have a crossover with type 4. I’d love to hear experiences!  I’ll do a blog about this in the next couple of days. Oooops, I forgot the “are you a liar” blog. I’ll do that one soon as well!
Happy and gentle hugs to you all: my Bendy Friends and those of you that care enough to read about what is going on with someone you care about that has EDS.
Ila