Yep. The struggle is worse now that both children are diagnosed, I have a permanently broken clavicle and my (ex) husband filed for divorce not too long after this article upon returning from Mayo clinic in July of 2013, knowing there was no cure for me.
God willing I will still find help or spread the word by sharing my Gofundme page is still up from 2012.
My children and I need Eastern medicine to even attempt to survive; let alone thrive.
I just received from DHS that I'm denied medical care because my YEARLY income is $8,800. I'm still the same whatever the Eff it takes.
Just had my 3rd surgery in less than 8 months for my other shoulder today. It went well and already feels better to not have foreign objects poking out of my shoulder.
On another note, my children are "officially" zebras themselves now. My only defense for my children is to be able to be proactive on making sure that they have the best preventative programs available to keep their bodies strong in the hopes that they do not exhibit the same level of pain and dislocations that I
have, none of the things that work are covered by insurance. I am hoping to start trust accounts for each child to help offset the costs. As a single parent with invisible disabilities, it is hard to make ends meet any assistance is a blessing to them and me in return.
Happy Holidays and many blessings to all whom have supported me, pushed me, loved me, and have helped my family over the last year. It is definitely an uphill, lifelong battle but I'm climbing daily. These two pictures show how immensely important everyone's love and help has worked, plus how hard I am working toward my "new normal", picking up my babies for the first time in over 4 years without assistance or a spotter just in case. You have all helped give me the most amazing gift ever, thank you. My wish is that each of you receive all the peace & love you can stand. Merry Christmas!!
Elizabeth has been going through a very difficult time physically and emotionally for the last 5-6 weeks. We have new symptoms that haven't occurred before. Very painful burning throughout entire body that feels like the burn from radiology dye, vein engorgement akin to a bodybuilder that comes and goes, along with chest pains. We have had her at 3 different hospitals, 2 new specialists (cardiologist & gastrointestinal) to see why she won't absorb nutrients. We have a new round of surgeries coming up either right before or after Christmas depending on when all her heart monitor information is completed. She's trying to stay as positive as possible but is really scared over these new symptoms. Please keep her in your thoughts and remember...there's no cure for EDS, just maintenance. The need to finish reaching the goal is imperative at this point so we will be announcing when the full auction is ~ just in time to cover holiday gifts :) Please continue to share and support Elizabeth. Thank you all for the support, it keeps her moving.
I am so sorry for my lack of communication. It's been a fun, crazy time with back to school preparations plus the added fun of a new district & kindergartner starting. I have also managed to break my coccyx, still figuring out how to create a permanent fix. I was denied disability again as well so in the sake of reality, I've also been trying to stay very positive while just devastated that I can still be denied and no more options are available.
On even more positive notes we have raised enough to start my prolotherapy in my rotator cuff & rib slips on the 26th of this month and almost all of Mayo's bills are paid. We have begun trying to set aside funding to cover my continuous care considering everything I need that is helpful is considered an alternative therapy, regardless of proven fact it works to "fix" far superior to surgery (which is a non-option for me) and the original plan was that disability would kick in since we were at appeals level from starting the case in 2010. Thank you all for continued support. The next few months will be rough; moving into our own space, my injections (which include a strenuous strength training/tearing/manipulation/taping process) and zero pain control to make sure I gain maximum benefits from the prolotherapy.
Even if not communicated often, all continued support is appreciated and thought of daily.
Just finished first "official" training start. I think I may have set the bar a little high official track time - 1.35 miles in less than 19 minutes. Average is 7:58 per mile. Believe you me, everything burns & I will stop shaking soon & it hurt like WOWEE!! but dang it felt good. Thanks for the help when I wanted to just stop I thought of all of you & my family. :-)
Thank you for the "sharing" it's so important. One share and we have received an additional $200 in the 2 hours since. Much appreciated as the total amount donated so far has already eaten through all medical bills from Mayo and we have more help needed for my injections & training.
This morning, I grabbed the mail to find the most amazing and awe inspiring letter included in a package from people I am almost certain are complete strangers. The beauty of this letter and the selflessness of two wonderful people. Mr. & Mrs. Freeman, I openly cried out of gratefulness for your beautiful hearts and an amazing donation of $800.00 as well as a set of stickers that meant the world to each of my children. In addition to your offer to help in some manner on a weekly basis. I sincerely hope it was ok to post your last name and amount, I am without further words to express the extent of my gratitude at this point. May you be blessed many times over. Love & Gratitude - The entire Vacha Family.
Elizabeth had all the typical symptoms of Ehlers-Danlos syndrome, up until she was injured during a car wreck in 2011. Since the accident, she has lost three discs in her neck, gained scoliosis, lost most of the cartilage that holds her ribs to the sternum and some to the spine. Her body will not produce collagen, so it's not healing and the break at her sternum is pinching off her upper intestine, lung and most of the nerves on her right side... Given the severity of her symptoms, it's nearly impossible for her to perform even the simplest of tasks. Please, help spread this message far and wide! Share her story through Facebook and follow her progress at: https://www.facebook.com/3ZebraZooPILZ
Although it took way too long to get this to you, here is the fundraiser money from purchases your friends made through Pampered Chef, plus my commission from it, plus a little more for it taking so long! I wish you the best and pray for continued healing for you!