A Miracle, and a Break

This year has been the most difficult of my life, starting with my Mom’s passing in January. Losing her was just the first in a cascade of bad news, and I made the decision to stop maintaining that laundry list because it just made me feel worse.

But three weeks ago, one of the worst and luckiest things happened to us. My husband had a stroke. Not only did he have a stroke, but he was misdiagnosed in the emergency room with vestibular neuritis. So he did not begin receiving treatment for the stroke until we got the accurate diagnosis last week.

As part of getting that accurate stroke diagnosis, we discovered that the stroke was in his medulla. One doctor told him that he was lucky to be alive, let alone walking around and not permanently disabled. He “dodged a bullet,” this doctor said. To have this type of stroke untreated for two weeks because of misdiagnosis, and to be walking/talking/breathing/swallowing unassisted just three weeks later is . . . . well, it’s a miracle.

My husband is my primary caregiver. Through the unwavering kindness and support of family and friends, we have been transported to every doctor appointment, had meals to eat, and all the emotional support that we need. But I had to become the primary caregiver in many ways, especially in making medical decisions and logistical arrangements. And because of that 2015 laundry list of bad news, I was crashed and depleted long before I had to summon an ambulance to our home three weeks ago, not even realizing that my husband was having a stroke.

The time has come for me to take a break. My use of social media, including this blog, will be extremely limited for a few weeks (at least). I will be monitoring email, but probably not responding to much of it. I am not “retiring” from advocacy, but I need to take care of my husband and of myself. That is my prime directive and top priority.

As I said, this is the worst and luckiest thing to ever happen to us. The only reason my husband is not dead or severely disabled is our good fortune. The stroke was extremely small, and the misdiagnosis did not kill him. Both of us will be ok, but we need some time.

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25 Responses to A Miracle, and a Break

  1. Anonymous says:

    What a year you have been having…

    I am glad your husband eventually received an accurate diagnosis and I hope his recovery goes well.
    I am pretty certain that your attention to detail and your perseverance were key to getting the accurate diagnosis.

    I am also glad that you have support from family and friends.

    Please take all the time you need.

  2. Nita says:

    Take whatever time you need to care for yourself and your husband. Absolutely! That must be your ONLY priority at this time. Although I will miss your blog and your advocacy, you are doing what you need to do! My thoughts and prayers are with you both.

  3. Sally Burch says:

    Wishing you and your husband a speedy return to easier times. xx

  4. magdalena says:

    i’ll be keeping good thoughts for you both in my heart! big warm hugs for courage, strength and healing <3

  5. Flo says:

    You will be missed. Stay safe.

  6. Carollynn says:

    I am so very sorry for your husband’s condition, all of the loss and challenge in your life this year, and every year since you became sick. Blessings to him for a full recovery, and to you as you help him on his path. You’ve always known what the priorities are. Feel the concern and support of our whole community, Jennie; take all of the time you need.

  7. Patty Hirst says:

    So very sorry about the passing of your Mother. I too have experienced that, and it takes a few years to get back to our “normal”. It’s a rough time. You have to take time for yourself and your husband, as you said that is definitely a persons first priority. Thank you for all of your advocacy, you always seem to know how to cut through the bs and get to the real problems! Enjoy some quality time with your husband = the rest of the world can and will wait. Bless you and your husband on your road to recovery.

  8. Russell Fleming says:

    I am so sorry to hear the news about your husband Jennie. I really hope that together you can get through all of this and by pulling back you are better able to manage.

    You know where we are if you need us. I will certainly miss you but can’t think of a better reason for you to take a breather from all this social media malarkey.

    Best wishes


  9. Cheryl says:

    Take care Jenny. I hope your husband has a full and complication free recovery. I hope that you don’t crash further. I hope you recover from your crash w/o falling further.

    We will miss you, but as the airlines correctly say: you need to put your own oxygen mask on first.
    ((( Jenny )))

    Just holler if you need/want us to do something.

    Best to you and yours.

  10. Chris Heppner says:

    very sorry indeed to hear this latest news–though glad it proved no worse despite the initial misdiagnosis. Let’s hope he makes a full recovery, though doubtless it will take some time.

    You will be missed, but life and family take precedence, and you can take some comfort in the signs that things may be changing slowly, due in part to your untiring efforts on this front. The NIH is giving Ian Lipkin and Mady Hornig a good grant to perform their magic on our behalf, and the OMI has just announced the receipt of sufficient money (not from the NIH, alas), to get a big study started. HHS (or was it CDC?) has put out tenders for medical education material based on the IOM study. Good things are happening, in spite of continued reluctance on the part of NIH, as witnessed by the rejection of a grant application from Ron Davis, and we can thank you for all the work you have done to push for a major change of attitude from HHS. It has clearly been having some effect.

    So now take a more than deserved break and tend to yourself and your own. You need and deserve that more than anyone I can think of.

    Best wishes, Chris

  11. RobinHood70 says:

    Glad to hear it was a good ending, at least. I’m sure I don’t need to say this (but I’ll say it anyway): don’t push yourself to start blogging or using other social media again. You come first. Take care, and we’ll see you when we see you.

  12. Sasha says:

    I’m sorry to hear about this latest episode in your year of stress and loss and I’m so glad that things have turned out so much better than they might have been.

    I wish your husband all the best for his recovery and hope that you’ll take good care of yourself. Your health and that of your family must come first!

  13. Jody says:

    Kindest and best wishes to you and your husband, Jennie!

  14. Sue Jackson says:

    Oh, my gosh, Jennie, I am so sorry to hear about your husband. I had no idea (haven’t been on FB much). You are right – it is a miracle that he is doing so well and has such a good prognosis. It is so tough when the cared-for has to become the caregiver – believe me, I understand. You are doing the right thing to take some time out to take care of yourself and your husband.

    Thinking of you both –


    Live with CFS

  15. janine says:

    Take good care of yourself and hubby too. Looking forward to your return and lively blogs.

  16. Kathy D. says:

    Oh, Jennie, what a tough year. Am so glad that your husband is recovering.
    Take all the time you and he need to recover. We know that your heart is
    with everyone in the ME/CFS community and that when you can, you will
    return to advocacy.

    But take care of yourself and him first and do whatever is needed for
    both of you.

  17. cort says:

    Sorry to hear about all this although it’s great your husband will recover. It just illustrates what a fragile situation many of us are in….Hopefully this next year will be a breakthrough year for ME/CFS….

    Good luck!

  18. Rivka says:

    jennie, WHEW! i am thinking of you and your family, and sending many cyberhugs.

  19. Betsy says:

    So sorry for all you’re going through Jennie but am so glad your husband will be ok. Take care of yourself.

  20. Asa says:

    Prayers and healing thoughts for you and your family, Jennie.

  21. Anne Ă– says:

    Oh Jennie. I’m in tears reading this. The things you and your family have had (and are still having to) go through in 2014 and 2015. And dealing with all that from a point of already very, very fragile health. If there were somewhere I could go to complain, I’d say IT’S TOO MUCH!

    It feels selfish somehow to say you will be very missed, but I’ll say it anyway, just to make sure you know how important and inspiring your advocacy work is to all of us. I for one am addicted to your blogs.

    All my thoughts are with you and your husband. And here comes a big hug.

  22. Wendy Boutilier says:

    What a huge game changer. Thank you for all of your work you have already donated to the ME community. It’s time now to concentrate on the most important issues in your life. Never forget that we are here for you should you need a helping hand. Lots of love.

  23. matina says:

    Wishing you an your husband the best. Thanks for all your advocacy now & future! Your family and health is most important!

  24. SF Moore says:

    So sorry to hear about this, Jennie. Godspeed to both you and your husband.

  25. Family first. I will be thinking of you Jennie. There is everything right with being able to put things in perspective. Time to take care of the care taker, for both of you.

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