This is Pashondra’s story as she shares what is it is like to live with EDS hypermobility type and vascular cross over type. She also talks about the following POTS, Dandy Walker Syndrome, Ménière’s disease, Mitral valve prolapse, Raynaud’s, and migraines. Please be respectful of Panondra and her story.
What is Ehlers Danlos? http://ehlers-danlos.com/what-is-eds/
What is Vascular EDS? http://ehlers-danlos.com/vascular/
What is POTS? http://www.potsuk.org
Dandy walker syndrome http://neurosurgery.ucla.edu/dandy-walker-syndrome
Where are you from tell me a little bit about yourself? What is your name, age, and disease/invisible illness/mental health? My govt name is Pashondra James 43 years old and suffer from Ehlers Danlos III as my primary illness along with POTS, Raynaud’s, Mitral valve prolapse, dandy Walker syndrome, migraines and severe Ménière’s Disease.
When did life change for you? When did life change for you? There are a few dates that had a significant impact on my life June 2, 1994, and August 13, 2004. My world completely changed March 23, 2011 which was my last day of work. I was so scared to file for disability that I waited 3 months. I finally applied June 7th 2011 and was so elated that I got my approval on July 12th, 2011. I was truly blessed to be able to just focus on my health. The day I was no longer able to drive alone greatly changed my life. Life continues to change for me…the never ending story!!
What was life like before diagnosis? What was life like before diagnosis? Life was great, full of hard work, and adventurous. Life was filled with trips out of the country and lots of road trips. I worked hard so I played hard and really enjoyed the space I was in prior to diagnosis. I was always doing volunteer work with the family court system which I thoroughly enjoyed. My symptoms were in full force by the time I got my diagnosis. My life went from being on the go constantly to moving in slow motion if at all.
How has your diagnosis changed your life? I’m no longer this carefree woman who can just pick up and go whenever I got the feeling. If I do anything that I enjoy I will spend the next week bed bound paying for my little bit of fun. I have to plan everything to the T. I have to take in account making sure I have enough medications, my joint braces, I have to know in advance how close the nearest hospital is to my destination, I need to make sure the person I’m spending time with knows what to do if something happens or if I have a flare. There is just so much to keep up with that the stress of it almost Keeps you from venturing out. I loved spending time with friends shopping and enjoying life but now I can’t walk long distances without dislocating my knees or ankles it is certainly a chore. One of my passions was to travel out of country and having to stop this has been a major change for me. I no longer drive alone and most times I have someone else driving which is a great help. I spend a lot of time at the doctors office and in the hospital a lot. I have missed many family functions and events due to this illness. It has greatly impacted my life!!
Please describe the best you can a day in the life of you? Wow how do I answer this question? My days are vastly different. I suffer from PAINSOMNIA so I can be up all night and sleep during the day. Once I wake up depending on how I feel It can take a while to get me started. I will normally get up and take my morning medicine with a little breakfast and see what I need to do for the day. If I don’t have any appointments then I will check my email and interact with my support groups. I mentor a few young people and it means so much to me that in spite of my disability I still have so much to offer. If I have to go I will make sure that all the errands are done in that one trip out. I love to take naps bc I feel like they give me that added push to get thru the rest of the day. I love to watch documentaries and doing lots of research on my illness.
What was/is the most challenging thing you have faced because of your diagnosis? I think the challenge for me was actually coming to terms with everything that came with the diagnosis. It was a bittersweet realization that I passed this illness on to both my children and it was this reason that caused them to pass away during birth. I say bittersweet because I find solace in knowing that they will not have to suffer and fight for their lives as I do. It was and is hard knowing that I would never get pregnant again so I mourn the life I would have had. It was challenging and very hard Leaving corporate America 3 months after diagnosis because I was scared of what would happen next, learning that most doctors that I have seen had never heard of this illness so it took a while to get my care team available. One thing that is extremely challenging everyday is looking perfectly fine while fighting an invisible illness and trying to explain it to people.
Do you find that you can keep up with others? There is no way I can keep up with others. We might start out at the same pace but at some pony I’m going to slow down because of my joints. If I have on my knee braces it makes it hard for me to keep a fast pace bc they are heavy. I’m thankful I have people in my life willing to just mosey along with me even if it’s a slow day and I’m thankful.
What would you tell others living with your diagnosis? That somehow our life matters and someone’s life will be better bc of us. To know they are not alone, Their pain is valid and that they are important to me. To remember God has a purpose for our trials and pain. I want others to know that we are so much stronger than we ever thought we could be. I need them to know that they are their best medical advocates and to trust their gut!
What would you like to tell others that don’t live with a similar diagnosis? I want others to know that we would never choose to live this life and we are doing the best we can. We want to be invited but not to take it personal if we can not attend. I want people to know that we are not lazy and that we fight for life every single day. Sometimes all we need is your presence, for you to believe in us and to learn about what we are going thru.
What have you learnt on your journey? That I have amazing strength and incredible compassion. I learned that I AM ENOUGH! I learned that having this illness does not mean I can not have a life. Living this chronic illness life has allowed me to learn who the real people in my life are and I’m forever grateful.
Is there anything you would like to add about your journey? This journey has been a lifetime in the making! As of December 14th I have had 18 surgeries fighting for my life and I’m still here. I have this illness but it does not have me. I’m a survivor that’s all I know how to do. I believe somehow my life matters and someone’s life will be better bc im in it. I have been blessed with children that God sent my way and I’m forever thankful. God has a purpose for our trials and pain. I’m thankful that thru it all my faith has remained strong.
Thank you for sharing your story with me and with the world. You are an inspiring lady and it is a pleasure to know you. You are a survivor. You are brave! Take care of you.
Remaning hopeful always.