Hi again my fellow EDSers and Chronics, Family and Friends,
Welcome to my blog! I am so glad you have stopped by. To share a bit about myself, I am a 42 year old mother of two amazing school-age kiddos, a girlfriend to my loving boyfriend and fur-mama to three animals. Oh and I have Hypermobility Ehlers-Danlos syndrome hEDS) which is a genetic connective tissue disorder, chronic migraines that cause dysautonomia (which is the autonomic system going haywire), and a whole list of other medical issues that tag along.
While I am living with my own medical illnesses, I am also a mom helping my kids manage their chronic medical issues. By ‘helping’ I mean observing, brainstorming, information seeking, advocating, med managing, a therapist of every kind, educator to others, seeker of that perfect balance of keeping them healthy and not holding them back, chauffer to appointments, and being just their mom. I think it’s safe to say it’s not been easy on anyone. Heck, it’s been overwhelming majority of the time but it’s been so worth it to see their progress, to see them happy and doing the things they love to do!
Six years ago I would not have been able to start a blog. I was just too sick. Perhaps you know what it feels like to have your body wage war on itself. For the pain and loss of function to bring you to a level where you don’t even recognize yourself. To have brain fog so bad it’s to the point of embarrassment. To feel so dizzy you feel like Dorothy on the bed during the tornado in the Wizard of Oz for hours. To have never-ending nausea where you almost throw up or worse you do. To have pain so bad you just want to live in your bed (well, some may actually do this but with kids I find it is tough to do). To realize your are struggling to take care of your kids and you start to rely on others to do so. To watch your child be in pain. To not have doctors listen to you when you know something is wrong with yourself or your child. To wonder about the future of your child, not knowing what it’s going to be like knowing a lot of their medical stuff will be the same, or worse. To have family and friends who struggle to be around you, not wanting to hear ‘it’ or not wanting to understand what you are going through. Unfortunately, in time relationships change, often not for the better, fading out or worse end. With pain comes more pain and it often comes in a form of heartache. Chronic pain or having a child with chronic pain – is – a very lonely place to be.
While this may sound like a cliché, you are no longer alone. I know this because I am here as are so many sharing and supporting others on our EDS message board (and other support groups as well) not only for people with illness but for their parents and loved ones. Once you start searching you will find many who are doing what they can to help. We are out there. We are the zebras. We are a small community but we are mighty!
However, the support is not just for those who have the illness. It’s for our loved ones as well. Let’s be honest. Being our spouse, parent, child, sibling, family, friends, work colleagues, anybody…it’s not easy. Some of us may try to smile and laugh through our personal hell but there is still constant pain that is impacting us and our lives. The toll that it takes on our loved ones, well, it can be really awful.
Let’s put ourselves in their shoes for a moment. To see us from their eyes. The hurt they feel knowing we are in pain is gut wrenching. The pressure for them to be our breadwinners, caretakers, or our children’s caretakers – can we even fully understand what it’s like for them? I do try, I have to say, I do, but it’s not always easy when we are in our own hell. When we feel hurt, mis-understood, not validated, not respected or what have you from our loved ones I encourage you to stop and think about what it must be like for them to love us. I’m all about gratitude and hugs so if you have it in you, take a moment to thank them and give hugs! (A side note though…some loved ones are no longer good for you and I am always in full support of letting them go too).
Before my kids were born, I was a counselor in a private practice as well as taught undergrad and graduate counseling and psychology courses. At some point I just fell in love with teaching, closed the doors to my practice and began teaching as much as I could! After the birth of my second child I was unable to go back to work due to my health. I am sure there are many of you who also have been unable to work. Not only can it be frustrating, it can be down right scary. My other full time job, besides being a mom, is managing all the health stuff. Who else has binders and medical files on their computers to keep their medical information organized?!? My work week is going from one appointment to another all in an attempt to keep myself and our son as healthy as we can be. Much of my other time is managing our health from home. While it took a few years I was finally awarded disability. Not a place I wanted to be, but I am relieved to the insurance and income.
I will post my full story sometime soon but the nuts and bolts is this…I have been in pain since I was 18, was finally diagnosed with what was then Hypermobility Syndrome (HMS) when I was 27, last ten years I was diagnosed with a whole slew of medical conditions. In July 2015, my HMS diagnosis changed to EDS-HT which is now called hEDS. It was life changing (more on that later). In January 2016, I was diagnosed with migraines that were and continue to cause my dysautonomia. In November of 2014 I was diagnosed with dysautonomia. In addition I have been battling chronic swelling, a common symptom of both EDS and dysautonomia along with a list of other medical issues.
It’s not my personality to sit and do nothing so I have spent the last five years working hard to find that right combination of treatment to gain function. That is always my goal…to increase function. And of course I will share my experiences of what’s worked, what hasn’t and my hope is you will also share your experiences! This is a great time to ask you to reserve judgement of what others do and what they have chosen to try. Everyone’s medical path is a personal one.
While I am finally in a place medically where I feel I have the ability to start this new adventure, there may be times where I am unable to post anything due to a flair up or what have you. I’ll always get back to you or post in due time!
So sit and stay awhile, perhaps with a cuppa tea or coffee! Please, feel free to gather any resources you need or share when you feel moved to do so. Let’s see where this journey takes us!
Gentle hugs,
Ashley