Updated April 20, 2015
Add Hemiplegic Migraines to the list. I finally have a name for them. And it explained my paralysis, poor speech and my poor eye sight. Not to mention the mostly right side pain and stroke like symptoms. I have never been diagnosed for seizures, but it also has not ever been ruled out, if I have them I get the vacant seizures.. not something typically noticed as a seizure. The name answers lots of questions and connects so many odd issues I’ve had for the past nearly 11 years. I get a physical Aura similar to people with Epilepsy can have, mine affects either my right side or left side, leaving me with permanent as well as temporary issues.
I am now an advocate for access to Medical Marijuana. CBD and THC specifically for the oil. Because of a beautiful girl named Haley that I met two years ago when I got Duke. Since then I’ve met Delia, and so many more beautiful children and adults who have Epilepsy, and so many of us who have other debilitating illnesses, injuries and issues.
What I wrote on my personal FB post today, “I currently have a script to travel to Colorado to use Medical Marijuana. I have not yet done so. When the money and the planets line up I will be there. Today is 4/20/2015 I don’t understand the significance in the Marijuana world about this date but I am sure someone will tell me… Happy for those who stood up for this when I was still adamantly against.. I cannot yet understand the damage I have done when I supported those with bucks and lies so strong. My eyes are open you see because now the one in need is me. The doctors don’t know what to do they shake their heads and pass me along.. So suffering I continue to do it today is me and tomorrow is you. So stand by me and join the fight for what we are learning now is right! Take back our choices stop listening to those rich powerful voices. Do your kids a favor and let doctors be the one to sign the paper.”
Eating Ketogenic or primarily so outside of Isagenix. Has been helpful, it hasn’t reduced the amount of HM’s but it has reduced the length and severity but it still takes about 8 hours to get rid of the aura’s let alone the migraines.
I have also been accepted with The Commission for the Blind and Visually Impaired. Which is becoming the biggest blessing outside of my family friends, Luka, Isagenix and Duke!
I probably should put more in here now but I am done writing for now.
Updated July 13, 2013
My name is Tonja I was an Independent International Mary Kay Cosmetics Sales Director, who while driving her Mary Kay Car was in auto accident in 2004. I have invisible disabilities that effect my daily life.
I have my trusty service dog Luka and my awesome husband Jason and some pretty amazing friends in my life that make my world a better place.
I am now a photographer. You can see my work at: http://imagesbyjasonandtonja.com
What I am looking for is understanding so I can live and be treated as normally as possible. I also have decided to help increase awareness with those who have invisible disabilities/issues as well as those who utilize Service/Assistance Dogs in their lives.
I do need help doing things, and I appreciate it! With out help I would be a prisoner of my present location. I am grateful I have my husband who provides gallant assistance when ever he is available and not working one of his many jobs. We have a select few friends and family who have taken the time to understand and ask what I need to have help with and then follow up with it. Please ask me questions, I am happy to answer all well meaning questions.
I am a person with Post Traumatic Stress Disorder (PTSD), Cervical Spondylosis, Migraines,
Ehlers Danlos Syndrome (EDS), along with a whole host of additional issues that also go along with EDS, including but not limited to Postural Orthostatic Tachycardia Syndrome (POTS), Osteoarthritus, Myofascial Pain Syndrome, and the latest diagnosis is MTHFR (Discovered in 2013), (UPDATE 2013: I used to have Osteoporosis, I have been able to correct this through diet and supplements), Brain Fog, I could go on.. I think I am getting sick just thinking about this stuff. =( Much of it is connected.
….Update: as of August 2010 I have just been diagnosed with a Traumatic Brain Injury or TBI from the car accident in 2004. It took SIX years for me to find the right specialist! YEEKS! So frustrating! This explains a lot. I am now wearing glasses to see if some of the issues above will be helped or corrected by this new finding. This explains why I fall easily and unexpectedly among other things. You can read my post about this discovery HERE. This is another interesting TBI article I have found. Very basic and informational!
… UPDATE 2013 The MTHFR diagnosis puts it all into perspective, when I found out. This can be the reason for my EDS, and how I would be so damaged from the falls and auto accidents that I have such trouble, and didn’t heal. As well as the food and absorption issues I have. It makes sense. Much of what I have stems from a genetic predisposition. Those in my family who have not been involved in trauma experience some effects and troubles, however those of us who have been involved in traumatic incidents such as auto accidents etc. are all having many more issues. Additionally the treatment from Dr. James Nedrow was particularly helpful! He is the doctor who gave me my special lenses! My treatment is finished. It took much longer than expected. My results didn’t give me my life completely back but what they did do is made it much easier. I was seeing life in one level, and physically experiencing it at a different level. What the lenses did was put both of these experiences on the same level. When I get tired or distracted something else still happens, and I get all messed up again. However for the most part I have stopped running into things, miss-footing the stairs, and I deal with inclines and declines much better. In my estimation, what Dr. James Nedrow did for me was nothing short of a miracle. Before I saw him, I had no clue my proprioperception was totally messed up! (Have you ever had or known someone with an inner ear infection? Magnify that!) I just kept missing things and stopped moving about much. I’d go see him before he retires if you have been in any sort of accident, had a stroke, or other neurological event and you have yet to find help. If you call his office ask for an appointment with him and let them know you are having undiagnosed issues. Many of these things will not be seen on an MRI or a CAT scan. You can find him at OculiVision.com =D He is a NeuroOptometrist and very special!
Ok so I’ve never really written these things all down together before, it is a little overwhelming.. hope this helps explain things for those in my life to gain a better understanding. In addition to educating myself, I’ve been educating those in my life including some of my doctors, who’ve been fantastic at seeing me through this part of my life.
EDS & Allergies I eat Gluten Free, as well as Dairy Free. Bad Gluten for me is found in Wheat Barley and Rye. I don’t drink soda by choice haven’t for about 13 years.. I do love a good gluten free and dairy free frozen pizza.. I mostly eat shakes and bars from Isagenix. Why? Because they are full of vitamins and protein, and the Dr. said in order to not fall apart I needed to make sure I got enough proper nutrients. This is my way of doing that. So far so good, as my vitamin counts have rocketed into the surplus levels from having been down in the negatives my whole life! Next check due August of 2011 for Osteoperosis fingers crossed it will be improved! Lord knows this girl is working at it. You can email me and I will share the name of the person who shared with me about the food that I believe saved my life. shine.shimmer.sparkle (@) gmail.com Oh, and I went from a size 16 to a size 2 nearly three years ago now.. =D That makes life a little nicer too!
I really hate that I need to be aware of all of these things. But I do feel less pain by doing it thus it becomes worth the extra effort. A big thank you to my friends and family who are on my journey with me, I do realize that this is not easy.
My friend B said to me, “I miss being around you, and if this is what I need to do in order to spend time with you, that is what I am going to do.” I about cried! She said this after having taken me out for the evening driving 40 minutes to pick me up, loading what I needed in the car, taking the car seats out so Luka would have a place to be (although he does squeeze into the front seat with me if needed) unloading my stuff, setting it up, loading it, helping me in and out of her car, etc.. You get the picture.
I have some amazing people in my life!
Duke came into my life at the end of last year! He is another Domesti-Pups dog. Things I have changed this year, I have gone back to cleansing more regularly which has been helping, and I still have one to two shakes a day, I feel better when I do two so I need to focus on that. I have changed to eating a Ketogenic diet, which is a common seizure diet. It is helping! What does this mean? In addition to my being lactose free and gluten free, I am also grain free, sugar free, and starch free.
What do I eat? other than Isagenix nutrition? I eat veggies and meat, with an occasional piece of fruit.
Why? Starches and sugars increase inflammation, with last years changes not really working the best for me, I was off to a painful and puffy start to this year. I needed to change. I’d been researching this but emotionally I didn’t want to give more things up.
I got really bad pain again in my digestive system and I knew I had to fix myself. So I jumped in and cleaned out my kitchen yet again.
It is really helping!
I have also added DoTerra Oils to my routine. I will talk more about those later. They are helping! Who knew!
Well, I am unique and creative I enjoy life as much as I possibly can I am figuring out how to live my life again.
It has been a difficult transition for me to go from living the life of my dreams to figuring out what to do now. I have always believed I could do anything I wanted, now it is just a matter of getting my body and mind to cooperate and come to some sort of compromise. I feel guilty for not being able to recover completely. I fight with this every day.
Writing here about my journey helps me to remember it is also helping others to understand. I am finding a sense of purpose in help create awareness and acceptance of people who have service dogs, as well as those with invisible disabilities. We have lots to offer we just have differing abilities!
So if you have met us while we are out and about living life, and I’ve handed you our card, I want to say thank you for checking out my blog. For learning a little about EDS, Service Dogs, and those with Invisibilities.
Feel free to also follow: PinkDoberman on Twitter!
You can email me at: shine.shimmer.sparkle (@) gmail.com
Sorry you will need to copy past and put my email address back together with out the ( ).
No solicitation please!
It is easy to receive updates on my blog posts: CLICK HERE and you can use your Google, Twitter, Yahoo, AIM, Blog Lovin, Feedly or Other account to follow me with. But I know there are many other choices as well.
I am not a medical professional, expert or anything of the sort, I am sharing my views and opinions and life. Consult an expert to receive correct information about what will be best for you! I also share some links to some different things you might decide to purchase. At this time I do not receive any compensation for sharing these links with you. I just enjoy sharing so enjoy!
I will also apologize now for any misspellings and punctuation errors. I try my best, however, I am not the most prolific writer, or a good editor. What I write for the most part is written and posted, not gone over with a fine tooth comb. I write for understanding and acceptance, not for perfection. If this bothers you and you’d like to continue reading with out errors, you are invited to become my volunteer editor! Hugs and Smiles, Tonja