) and walk with a cane or walker. I am fully homebound, using
services such as PT, OT, and bath aids. I have been using a home health nurse, but have recently been switched to
nursing. That term in itself is daunting because it is typically used for end-of-life care... In my case, my palliative care team has been integral and maintaining some semblance of a "normal" life.
Late this summer, I was also hospitalized for two weeks after a traumatic injury in my home. Since VEDS causes frequent dislocations, I was simply going to make coffee in my kitchen at about 6 a.m. on June 29th and my kneecap dislocated, causing me to fall. (The following story is medically graphic in nature. It is not something that I have shared publicly, mostly because it is still so fresh and so emotionally painful to talk about. But I need help, and in order to receive help, people reading this need to understand the battle that I am facing.)
As most normal people would fall and catch themselves with both hands on the floor, I caught myself with one hand and the other wrist bent over and my whole bodyweight landed on it, causing it to dislocate and shatter, along with my lower arm. I then flipped over and my back hit the island, causing compression fractures in my lower vertebrae, an upper vertebrae fracture, a broken rib, a broken jaw, a broken nose, and it also caused one of my teeth to pierce through my bottom lip. I woke up in a pool of blood with a grade 3 concussion. I have been through many, many medical emergencies and traumatic, and this - by far - has been the most traumatic and life-changing incident that has ever occurred.
This accident has deemed me permanently disabled. Yet, I am not yet receiving disability. This poses a major problem for me and my girls. Financially, I am struggling. I am struggling with day-to-day life as well. I can't bend over, or twist, or do anything that day today life requires. So I need help with every single thing... Bathing, getting dressed, cleaning, laundry, shopping... And luckily I've had people to help with some of those things.
In addition to everything else, when I came home from the hospital, I discovered that my home had flooded, along with many surrounding homes. So I have been faced with the cleanup and financial ramifications of that as well.
MY OTHER HEALTH SCARES
Prior to my recent traumatic injury, I was hospitalized, once again, just days before, with severe cellulitis
of both legs and feet for two weeks. All of my specialists still never concurred on the diagnosis, nevertheless; it had left me without the ability to walk. Just prior to that I was walking around and doing normal, everyday things with my daughters... And by that afternoon I was unable to walk and was rushed away by ambulance.
I spent two weeks in the hospital following that diagnosis, still unable to bear any weight on my feet or legs, leaving all involved incredibly frustrated and baffled (including the healthcare professionals, friends, family, loved ones, and myself). Doctors were talking about rehab facilities and long-term recovery centers... Something I'd give anything to avoid in order to remain with my three beautiful daughters... And something I was not willing to do. (Little did I know only months later, after I was diagnosed with acute neuropathy and hospitalized for six weeks, I would be forced to enter a skilled care facility for three more weeks.) So I was finally discharged and sent home, only to return less than a week later for my traumatic accident.
Most recently, before that hospitalization, I was diagnosed, hospitalized, and treated in multiple hospitals for a severe ocular hematoma
resulting from simply from vomiting. I was extremely lucky to escape with my eyesight.
Late in 2017 I was diagnosed with probable cancerous cells in my spine and rib. Since I received the preliminary test results, I'd had additional urgent, life-threatening conditions develop in the meantime that required multiple hospitalizations. At this time, it not yet known if this is primary bone cancer or a secondary, metastasized cancer. They have to address the life-threatening conditions first, before they pursue all of the additional testing needed. So for now, we are treating the conditions I've described, and then once I have shown some improvement we will move towards addressing their other concerns and diagnoses.
I spent the very end of 2017 with a rare condition called Platypnea-Orthodeoxia Syndrome
. This developed following my pulmonary embolisms, and caused me to need oxygen 24/7, as my body could no longer oxygenate on its own, resulting in acute respiratory failure with hypoxia. This condi(tion left me on home oxygen for months.
I spent the end of 2017 in the hospital for an unexpected medical crisis: multiple pulmonary embolisms
(blood clots) in both lungs and a DVT (deep vein thrombosis) in my left leg. It's a miracle I didn't die from these conditions alone... If left untreated, they often lead to high mortality rates (50%+). They were accidentally caught during a chest CT for a different condition, so I am extremely grateful I didn't reschedule my appointment as I was planning to do, since I didn't feel well. ￼
In addition to the recent PEs and DVT, I have also suffered adrenal crisis (also known as Addison's Disease
); a pulmonary crisis; radial nerve palsy;
and sepsis. All of these required separate hospitalizations for extended periods of time, where I had to be away from my children and was forced to fight for my life.
I have also long-suffered from a genetic condition called Vascular Ehlers-Danlos Syndrome
, a very rare collagen (connective tissue) disorder that causes joints to frequently dislocate and threatens my life with the risk of spontaneous organ rupture, something I have already endured.MY ENDURANCE
Over the past year, I have spent more than half of it in the hospital. It seems lately, as I take one step forward, I am shoved three steps back. Utilizing home healthcare at every turn. At the very least, this experience has been humbling. I've learned to ask for help when I need it, and not be too proud to speak up when I'm not doing well. Pride is not allowed anymore... It's not even in my vocabulary.
Many thanks to my parents and close friends, once again, for jumping to the rescue (when my daughters' father was not available) and they make sure the children are well taken care of. My girls have always fought right by my side, and are with me every step of the way. They have to face harsh realities that children should not have to endure... Yet they do it with no complaints, always attempting to help Mommy in any way they can.
As you can imagine, this is very hard on my girls. Many pictures they draw me is of me with angel wings... I never thought their pain could break my heart the way it does, and all I want it for them to be KIDS. They shouldn't have to face mortality like this... Especially fearing for the life of their own mother. But, as life goes, we can only take it one day at a time. And I will continue to show them in every way possible that they are MY WORLD. They are what's most important to me, much more important than my own health. I want them to be happy. And I would give anything to take this pain away from them. ￼
Beyond my extraordinary family, I am also blessed with extremely supportive friends, who make life bearable when it feels like I can no longer fight. They always come to the rescue. They are prime examples of how to walk through life's hardships with dignity and grace. ￼ WHY DO I NEED YOUR HELP?
Financially, the struggle is at a DIRE standpoint. Because of the traumatic accident, and prior health issues - and because of the fact that I am disabled, cannot work and I'm not yet receiving disability - I am facing the reality that I will SOON lose my home. The only home my children have ever known, the place that we live and gain comfort from - we are losing everything. And I'm at a point where I don't know what to do.
I have to remember MOST importantly that I am LOVED, that my girls are LOVED, and that no matter what I am their mother and I am a darn good one. These girls are my life, they are my world. I would fight through any of this pain over and over again if it just meant that they were safe and secure and happy.
Because of these financial difficulties, this is one of the reasons that I set up (and updated) my GoFundMe again... Because close friends of mine advised me that I should share this with the world. That I should let people know that I NEED help. That I'm not perfect, that I am suffering, and they reminded me that there ARE people out there willing to help. So now, I am counting on that fact. I am PRAYING that there are people willing to help me and my girls. These girls deserve the world, and I don't care about me and the pain that I'm going through... I just want them to be happy. I want them to have a good quality of life. I don't want them to suffer because of what I am going through. I just want them to be kids and enjoy their lives and grow up happy, healthy, and free.
As I mentioned, due to my multiple complex health conditions, I have not been able to work and I am not yet receiving disability. As you can imagine, I am having GREAT difficulty paying bills, keeping up with rapidly rising medical costs, and even simply buying food for my family. Due to my multiple conditions, it is impossible for me to work at this time. If I do not receive help soon, my girls and I will lose our home. I am too stubborn to go down without a fight... There are those, of course, who expect to see me fail. I refuse. In short, I am running out of time. I believe in miracles. It is a miracle that I have even survived these health crises. It is a miracle that I am alive today. But what we need is a MIRACLE to remain financially afloat, we need a MIRACLE to keep our home.PLEASE CONSIDER DONATING!
I am already a survivor... Due to my serious health conditions, I have fought most of my life. And things simply continue to worsen. But despite my medical challenges, I have spent a lot of time giving back to the community and helping others in need, doing pro bono public relations work for deserving non-profits across the Midwest. Helping veterans (those with PTSD and TBI), helping families of fallen service members, taking service and therapy dogs into facilities like ChildServe, Orchard Place, and YESS. Never expecting anything in return for my pro bono work.
But this time, today, I need YOUR help. Every little bit counts. Click on the link, make a donation, and help me fight the most challenging battle I have yet to face. ￼THANK YOU!
Thank you for taking the time to consider donating to support me in my battle. If you can't afford to give money, we could use meals (there is a Meal Train
to help with meals for me and the girls); other comfort items (even seemingly small things like toiletries); assistance with cleaning or yardwork; clothes for the girls (SEE update!); or even small gifts, games, art supplies, or books for the girls.
So far, the generosity of some people has been overwhelming. I continue to have health issues including the spreading acute paralysis, and then this recent traumatic accident... And recent flooding in my basement. Which leaves MORE financial burden. But there continue to be people who fight for me, who help with day-to-day tasks, and without those people I would not be able to function at any level. So I need to say thank you to those who have helped so far.
If my story speaks to you, please consider sharing this with your friends and family on your media timelines. Your support means so much!
And lastly, hug your loved ones today... Hold them tight. You never know how much precious time you have left.