Welcome to my journey. I am starting this blog to track my day to day. You are welcome to follow along if you would like.
To give a little bit of background. I am a wife to a wonderful husband. This September Josh and I will be celebrating 5 years of marriage. We met in college over 8 years ago while I was attending VCU. We have a son, Seth, who is 7, and a daughter, Lily, who is 4.
The reason why I want to track my day to day is because on May 28, 2012 my entire life changed. After a weekend trip to Pennsylvania I woke up Monday morning unable to get out of bed. When I did get up, I walked like I was drunk. (I don't drink.) I was sick to my stomach all night the night before and when I started to throw up, I would black out. This went on for 3 days before I finally went to the Urgent Care (Wednesday). The doctor ran lab work. He stated that I was probably fighting off a virus and it will go away. By Friday I wasn't any better and by Saturday I was in the ER. Labwork, urinalysis, & EKG and I'm told I'm dehydrated from earlier in the week. By this point I can't walk without help. I'm constantly dizzy and nauseated. I feel like I'm on a boat rocking back and forth.
Monday morning I was feeling a little better but I have a lot of joint pain in my hips, knees and ankles. I am still feeling worn down, tired, and dizzy. I still feel like I'm on a boat, but I'm not getting sick anymore. I decided to try to take my son to school four blocks away from my home. On my way back from dropping him off I started to black out again. I immediately call Josh and my mother. Josh came to get Lily and wait for my mother-in-law to pick her up while my mom took me back to the ER. They decide they are going to do labwork, urinalysis, EKG all over again. They are going to start meds, order an MRI and CAT scan of my head. The nurse goes to place my IV and I literally jump off the bed. The pain in my elbow has me in tears. It was the worse pain I've ever felt. In the end they tell me I have Vertigo and I need vestibular rehab.
I go home and immediately call my favorite ENT specialist, Dr. Dorofi, who tells me (over the phone mind you) "You do not have Vertigo but Mal de Debarquement Syndrome. Look this up and I will see you tomorrow to officially diagnose you." I immediately start bringing up the information and its exactly how I feel. I also read..."There is no known cure." "It will go away on its own, if ever." "Some people it lasts a few weeks, a few months, up to a year." I later find out that there are people who have had it for years.
Fast forward 8 weeks later. I'm still here hanging out on my own personal sailboat (as my little brother tells me "happy sailing" when he finds out.) I have gone through 6 weeks of vestibular rehab. I have tried Meclizine, Transderm Scope Patches, Valium, Phenergan, and Zofran. I have seen a chiropractor as well. I am waiting to see a Neurologist because apparently my coordination is not correct, so I need to make sure nothing is underlying. I have been unable to work, unable to drive, and unable to go out in public without a lot of prep work prior. I have however re-learned how to do a lot more. Some days are really good, while others I don't even like to talk about, but I must.
Music has gotten me through a lot of good and bad days in my life, and it is no different now. Each day I have a different mood of music and depending on what my goal that day, the music tone follows. Here is my day to day progression...
I too have MDDS. My sypmtoms have been with me since Aug 2010. Join us at the MDDS foundation support group on Yahoo.
ReplyDeleteSara it is wonderful that you are doing this blog to show to the world how MdDS affects you on a daily basis. The condition is poorly represented and received by most of the medical community, that’s why awareness and education such as your blog is vital. If it wasn’t for the MdDS Foundation then research would be a non-starter but we still need more. They, the medics, say it’s rare, I say it’s all too often misdiagnosed, or simply overlooked, or given a one size fits all label of vertigo. Rare or not it still has a profound impact on the lives of those with MdDS and there are invisible injustices’ in having an invisible condition.
ReplyDeleteI hope that music brings you still waters. Have you seen the music video from the MdDS Foundation uploaded onto YouTube? It’s a couple of years old now I think but it was intended to help raise awareness of MdDS and get the message across of how those with it feel, in a fun and frivolous way.
http://www.youtube.com/watch?v=-bJD9VgRw-A
Yes, I have seen the video! Thanks for the response!
ReplyDeleteMy MdDS came on spontaneously January 2008 during a session of yoga stretches. I also required reparative surgery for a fistula in July 2008. I've been left with MdDS since that time. The MdDS Foundation and VEDA have been awesome sources of information. I question how rare this is really is after seeing the blogs from the US, England and elsewhere. It certainly is little understood in the medical community. The 5th ENT finally understood. I was referred to a wonderful balance therapist who helped me learn to cope. I'm praying for effective treatment from the research. I'm 63 and was forced to retire early. I've been married 40 years to a supportive husband and have 2 grown sons. Yes, my life has changed dramatically. Maintaining a sense of humor is important. Gardening, plunking at the piano again after decades of not playing, simple crochet projects with light colored yarn, & sewing have all provided support. Meditation, Reiki, listening to Reiki style music have provided the most positive calming support. I appreciate things I once took for granted. My "To Do" list happily waits!! My heart goes out to all who are experiencing MdDS.
ReplyDeleteI too have MdDs. My came 3 days after a complete hysterectomy surgery on June 25, 2009. June 28, 2009. My whole life change. Luckily, I'm a single woman and a mother of two beautiful grown up daughters age 29 and 31. So I don't try to over stress. which can make it worst. I take one day at a time and always pray to God to please make this goes away for me and all whose suffer this syndrome. May God bless you and continue to give us strength to take it one day at a time until a cure is found.
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