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Hello everyone!I just wanted to chime in for a second here and introduce myself. I am Tennille Shipley, and I will be helping Dr. Diana with coordinating the Blood Registry. Such an amazing opportunity! A huge thank you to Dr. Diana for pushing for this for us 🙂 And a huge thank you for those who will be volunteering their blood 🙂
I have already responded to all of you who have emailed so far. As each email comes in to Dr. Diana, I will respond to each of you personally.
Again and again a deep Thank you to Dr. Diana for allowing me to be a part of this and pushing for so much for us! It is wonderful and refreshing to see so many working together 🙂
Anyways, I wanted to quickly introduce myself so that those of you who participate can sort of ‘meet’ me on here and at least see what I look like :0) As that always helps in relating to folks. 🙂
Many Blessings everyone!
Tennille Shipley from TN 😉
((((((BIG HUGS)))))). Wow…. you have a huge load to bear. I just wanted to let you know, you are not alone. Your post could have easily been mine with all the symptoms, etc. I have no idea what kind of help that could be available to you. Are you disabled officially? If so, are there programs where someone can come in every other day or every day and help out? It seems you don’t have anyone who can help you 🙁 I’m so so sorry. I can’t imagine the chaos, stress, worry and on top of being so sick too. I see this question/situation alot, in different states, different countries, etc (on other boards), and I just have no clue how to help. I wish there were programs set up for folks like us who need some helping out. Maybe you can search for some, or call your local department of human services and see if they might know of any programs, or people you could call to come in help you some? Maybe explain the situation? Or perhaps you can contact some churches who may have some type of programs to help the disabled, etc. It’s possible, sometimes you just have to dig deep…. and i know, most times we are too sick to keep digging, but it seems, if we are to get anywhere for ourselves, diggin for info is a must.
You are in my thoughts & prayers darlin’…… you are so close to my age (im 34, with 2 kids, their dad went history 13 years ago, never heard, nor even know where he lives til this day).
Just wanted to let you know you are in our thoughts, prayers and positive energy your way. Keep your chin up, and see if you can call around for info on programs that might be out there that could help you. 🙂
Lots of hugs & love from tennessee!!!
tennille 🙂
I too have this a alot and find myself massaging the area all the time. I would say this symptom for me is present at least at a minimum of 65% of the time, varying in severity, etc. I also have a feeling of a burning, acid-like, yet tingly pain on the inside of my neck, at the base of the skull, where it meets the neck, but it feels as if it’s on the inside of my spinal cord, as in, it’s an inside pain, not pain from the outside. The burning feeling is the most prominent feeling and the most bothersome.
thanks for the question!
~tennille
Hello everyone 🙂 I’m new here to the forum. My name is Tennille. I wanted to quickly chime into this thread really quick because for many years I have had this paralyzed issue and have asked so many people, docs, others with my diseases, what it is, if any others experience this and what is causing it, but to no avail. I have not had anyone who could relate, even on dinet. Imagine my excitement when i read this!!!! Someone has experienced this too perhaps?? I was too excited not to jump in even though the thread is a few months old and im new here 🙂
I first thought perhaps it could have been an autonomic attack or seizure (but the paralysis could be long term, going into days, weeks). Here in the past year or so, I was thinking it could be anaphylactic shock. But I still have no clue.
I don’t seem to have real issues though when lying on my back, UNLESS i am in a flare up. When I am in a flare up, I have to lay on one side or the other, sleeping is the same. If things are in control, i can fall asleep on my back but eventually i sleep most all the time on one side or the other. But again, in a flare up, yes, i find it every challenging to lay on my back and I also feel like things seem so skyrocket in the symptoms, which gets a tad scary, hence, why I stay on one side.
Back on the paralysis, mine would be so bad that yes, i could not speak. I couldn’t even move my lips or lift my head or lift a finger or barely keep my eyes open. I wasn’t sleepy and I was coherent and could hear all that was said, but there was no possible way I could respond. Now that, is scary. I spent 3 days straight in the hospital due to one of these attacks that kept repeating itself, but that time i was ‘stuck’ in it for days. No one could find anything wrong. Gradually, i would come out of it, but several times I have felt like death was near, cuz during these paralysis spells, i cannot breathe….. as if my diaphragm isn’t working or the muscles are paralyzed themselves and i have to solely concentrate with all my might on the breathing. I usually pant like a dog too during this.
I haven’t read through this entire thread, as I think I am in a flare up, but feeling a tad better each day, still requiring loads of rest though.
Thank you everyone….. i’ll go back and read through the thread in few when i rest up for a few. 🙂
~tennille
