Meet invisible illness warrior and young mother of three, Emily.

emilyr

What caused my MdDS? Not a cruise. Not a windy drive. It was a medication given to me while I was under anesthesia having an operation. I was put under general anesthesia to remove a kidney stone that had been lodged in my right ureter for three and a half months. A pretty routine procedure, it went just fine.

Except I woke up, and life has never been the same.

I am thirty years old, and I used to have dreams of summiting Mt. Everest and traveling the world. Now it’s an accomplishment if I can run more than one errand in a day. I have three small children, ages 7, 5, and 1, and a wonderful husband. But the MdDS spills over into the lives of the ones we love, doesn’t it? It’s an untruth to say otherwise. I have a full time job, also.

I should also say that I am a Christian, and while most days I do feel hopeless (just being honest), I try to center myself in Scripture and in Christ. This is a nasty fight we fight and for many of us, it is an invisible one fought at home. I take comfort in Psalm 62:8, “Trust in Him at all times, you people; pour out your hearts to Him, for He is our refuge.”

4 comments

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  1. Linda Peddle

    Oh my. I am so sorry that this happened to you. My MdDS was post-cruise. Yours is the second case that I have heard of getting MdDS post-anesthetic. I know of one other case where the person came out of remission post-surgery. I believe she was given Propofol despite having requested not to have this particular med. Do you know the anesthetic that you were given? I have had 2 surgeries since having MdDS and luckily I remained the same – no better, no worse. I hope that you find relief soon.

  2. Julie Lemoine

    Don’t know how you fellow rockers deal with this on top of having children to care for. I couldn’t see myself survive this with such responsibilities. You are an inspiration. I do agree having faith goes a long way plus support from family and friends

  3. Sue

    Given that you mention the removal of a kidney stone, I hope you have explored the possibility of parathyroid disease. I am a long time sufferer of MdDS which followed a cruise 23 years ago. The rocking, swaying, loss of balance and constant feeling of walking on a trampoline except when on a train or boat has NEVER left, even for an hour, except during the night when awakening from sleep. Ironically, 10 years ago I was diagnosed with a genetic type of parathyroid disease which required the removal of 3 1/2 of my parathyroid glands (Cleveland Clinic) prior to which I had had a very large imbedded kidney stone which was lithotripsied and still did not entire pass all of its debris. I am thinking, as I read your blog, that perhaps those two conditions are somehow related.

    Since my parathyroid disease was essentially non-symptomatic to me, the diagnosis was made from a siphisticated scan of the thyroid gland which was prompted by variations in blood calcium levels and the kidney stone.

  4. Brenda

    After having read up on all the new research and advances they are making, please do not feel hopeless! I believe Dr. Cha is recruiting for patients to participate in their testing on another round of treatment that has proven to help. Please see her post: https://mddsfoundation.org/author/ycha/
    Second to that, I was able to slowly readjust my motion perception with my activities of yoga and running. I truly believe that yoga helped me to become more grounded in the beginning when it was the worst, and then I notice that I felt better when I was running and then noticed a cumulative effect of improvement each week or so. Because it is so much slower than being in a car, I think it somehow helped reset things. You seem a strong, active woman if you were hoping to mount Everest, so if you are able, give running a try. To be specific this is outdoor running – a treadmill would not work because it is the visual reset of things passing by that I think might have helped. It took the better part of a year of running several times a week, but I can function so much better now. I only have relapses if I get overtired and/or do something I was unaware would trigger – such as speed elevators in NY city hotels.

    Good luck and I hope you are able to attempt one of the suggestions because I truly believe there is help available now that there simply was not even a few years ago.

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