I am sick and I will not get better. I have chronic illnesses and no one has any clear simple answers for me. I am a Zebra. I'm Atypical.
This really may be about as good as it gets and I am working to be happy and thankful for each day. What I mean is my health will not get any better than it currently is, but I do have Other things to be thankful for. I have an amazing Daughter, Emerald who has taken her time to help me which is a big deal in your early twenties. We are blessed she chosen to come spend time with us after finishing school. I have a wonderful Partner, Rob who has come to countless doctor appointments with me, some we have waited months for and have turned out to be a total waste of our time. He has watched me change, learned I will not get better and yet stayed by my side. I would be lost without him. The old me was so much more fun, yet here he is. I also have Bruiser the cat who courted me for years before he could become part of our family instead of the neighbors. For all these reasons and more I am blessed and while I know it....Honestly, sometimes I have a tantrum. That just does no good, so I need to figure out the Chronically Fabulous Thing. *grin* Others have done it and I will too. I am used to being the strong person, solving problems and leading for someone else. This whole no solution equation and being focused on myself is taxing me....literally! Fatigue City! It makes me tired just considering explaining this, but I am going to try.
How did I get here & Where the Hell am I? I sure wish a doctor could tell me in a short answer.
I did not speak in the beginning, because I thought I was sick with something that we would fix so, no need for discussion. Later, I did not speak as I thought I would find a shorter answer for what was going on, we started with chronic migraines and quickly moved to most of the doctors thinking it was MS. I still face doctors who think I have MS from time to time. I started telling a few close friends and family what was going on when I started immune globulin treatments, but still hardly disclosed what my life was like on a regular basis outside of my home. I know we have ruled out MS now. I have something similar to MS, but that is why it is so confusing to most in that… it is similar, but different. The more time that passes the more complex the situation has gotten and it was just overwhelming to try to tell this story. The more I learn the more the story has to back up to have some previous diagnoses corrected so it is a tangled ball of confusion at times.
In late July 2013 I received a diagnosis of Ehlers Danlos Syndrome in addition to the similar to MS disorder and I thought maybe things would start to come together in a clear path. The path is not clear in fact there is no path. I do not know that there is even a trail of bread crumbs. I have met some other Zebras and similar, but different people also battling. We are lost together. Can you picture us? Similar, but different & lost together. My Dear Friend Cecelia could capture this with her art. Do you still wonder why I sometimes have a tantrum? I have learned more about the human body than I ever thought I would want to know and I am still reading and learning daily. I very much wish I had chosen to study biology so that I was better prepared to live successfully on this road I need to walk. You have to advocate for yourself when you or a loved one is ill with something atypical.
It is suspected that I have an autoimmune disorder causing my autonomic nervous system to malfunction, but it has not specifically been labelled at this time. This is what I mean when I say similar to MS, but different. I responded to the treatment for over two years and this was our confirmation of an autoimmune mediated inflammation. It may have contributed to the peripheral neuropathy and thus, muscle deterioration which really brought to light the fact that I have Ehlers Danlos Syndrome. The weaker I have gotten the more joint issues I have had and it is a slippery slope that immune globulin treatments were keeping me from charging down full force.
A challenge has been dealing with the cycle of adjustment … I can walk well one day and hardly hold myself upright and lift a glass to my mouth another. I can cook, shop and garden in small amounts one day, but then not open a water bottle or close the gas cap on my car without warning. I can sprain the palm of my hand turning the steering wheel, picking up my mobile phone or simply being Italian talking with my hands. I cannot regulate my body temperature in heat or cold most of the time now. It is the without warning nature of this disorder, that can make it next to impossible to cope and so challenging to speak. Literally there are times I cannot speak due to either muscle fatigue or lack of air, who knows, but sometimes it is just emotionally too much. Where do you begin to tell a friend that your life has just stopped in its tracks and you are weaker than your 92 year old Grandmother at 42? I tell myself I have to accept the life I have now in order to move forward, but it is next to impossible to wrap my head around what this life is, what I should expect and what I am to prepare for. No one can tell me what I should expect given that we are not 100% certain what is going on - again the nature of rare disorders. I am in a holding pattern and continually declining as the temperature increases and time passes. Being unlabeled, undiagnosed, not clearly diagnosed, lost, rare, atypical, outside, and different is isolating. It makes it challenging to speak. It is almost as if my battle is somehow less valid.
I have found it hard to get past grieving the life that I had when I still experience glimpses of it and think maybe, just maybe I can get strong enough once again. I still remember that I used to take on 92 flights of stairs once a week along with my regular workout and now I cannot even stand in a pair of high-heels due to muscle loss. I believe the cyclical nature if these disorders make the reality of the situation harder to face. It is the how “did I get here” part of this story that can be so very hard some days. I struggle to tell anyone else, because I struggle to see it myself. I struggle to accept it as my reality.
Sometimes I refuse to give in to think I would rather die trying to LIVE than live just trying to survive. Then, I always pay dearly for overdoing it. But one must have things to be Passionate about and Live.
The fight in me does not go away, but the energy will not come back to fully match it. There are no known cures for what I battle only supportive treatments at best. My insurance company has taken away the best and most effective treatment for one of them as "not medically necessary", but that is another story in and of itself. My doctor is battling them and hopefully part of my deterioration is the lack of this treatment and some of it will reverse if she can prove helping me is Medically Necessary.
In addition, the lack of medical understanding, research and therefore knowledge due to the rare nature of these disorders adds to the equation. As you attempt to seek solutions you find a wall of ignorance often followed closely by arrogance as though this ignorance is your fault. You as the patient must be wrong in your symptoms or diagnosis, rather than they the doctor or medical professional lacking in their training or knowledge in this area. I have already endured many years with the wrong diagnosis and come this far. I still have great respect for the amount of time, sacrifice and dedication required to earn a medical degree, but I have only met a few medical professionals with the courage to tell me they do not know. They do not know what is going on, but they do know something is going on! That what how the best relationships with good Doctors begin. I have been blessed to find some good doctors, but I had to be patient and determined to find them. I also had to have the wisdom and courage to fire the ones who did not serve my needs and move on to another one.
While I work to rally a positive attitude the heartbreak and grief is always close behind it. I strive to look most on what I can do and what I have, rather than focus on what I have lost, this is not always easy. Today is one of those days that it takes all of me to just sit up and move my arms and yet I slept over 10 hours. I have been stuck in a phase like this that has not ended day after day for a week. I work and I come home and rest so I can work again feeling like I should not even be out of bed my body is so broken. I have been getting progressively worse since my treatments were halted. If my treatments are not resumed or some other solution is not found I am for the first time anxious about the future.
How do you continue to fight when it is your own red blood, your own genetic deficiency, your own body that you battle every single day?
May is Ehlers Danlos Syndrome Awareness Month. I have Ehlers Danlos Syndrome Hypermobility Type. EDS is an inherited disorder that affects the collagen and thus the connective tissue in my body. I hope to continue to share with you through the month some of what that means as there may be someone struggling undiagnosed in your world.
We should always feel like we can continue to seek answers. When a door closes in our face we need to create another opening. I am trying to do just that and later this year with visit more specialized doctors in Maryland to start seeking additional options and solutions. While I am tired I do not know how to actually give up.
Jolie Élise