Bedside Thoughts

I write this from my wife’s bedside in an acute respiratory rehabilitation unit in a South Florida hospital. We are beginning our 7th week of hospitalization. You may ask yourself, “What does the journey of this couple have to do with MS?” The answer is: everything.

The purpose of this blog is more than a source of therapy for a spouse caregiver and greater than the need to rant about the inequities of life. The sole purpose of this article is to shine a very bright light on the difference between MS-related fatigue that may accompany an exacerbation and the ever so subtle presence of coronary disease and how it may present itself in women.

Our innocent and naive journey began after a visit from our children and grandchildren. At some point during their visit my wife ran a low grade fever. We attributed the fever to a bug she caught from a grandchild. The fatigue persisted for several days so we called her neurologist. The answer we received was that she may be having an exacerbation and to give her a few weeks to regain her strength.

After a few weeks, and what we thought to be anxiety related to the lingering exacerbation, we visited our primary care physician in Florida. While my wife described the markers that would suggest a cardiac-related incident, she was dismissed, despite asking for blood work to be done to test for a kidney infection. Three weeks after the visit to her doctor my wife ended up in the ER. She needed stents installed in three arteries.

There is no need to go into the gut wrenching, emotionally charged, roller coaster that we have ridden for the past 42 days. What I desperately want to come of this nightmare is for you to push your primary care physicians and neurologists to investigate whether symptoms you’re experiencing may be related to something other than MS. Regardless of the cost, time and energy needed to conduct such an investigation, failing to do so can result in life-changing – if not fatal – consequences.
Tags Activism & Advocacy, Caregiving, Healthcare      10 Appreciate this
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Bob

Bob Ruder

Bob Ruder has been married for 47 years to his college sweetheart. Prior to retirement he was a special education teacher and middle level school administrator for 37 years. He firmly believes that every person needs a medical advocate.  

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    9 Comments

  • Kim Southworth   Nov 16, 2016 3:20 PM
    I am so sorry to learn what you and your wife have gone through. Yet your story is very important. I hope your experience will give other individuals with MS and their families the courage to challenge a healthcare professional when they feel the issue isn't MS.
  • Linda L Halvorson   Nov 16, 2016 3:44 PM
    One of my fears after 40 years of MS. Though my parents both died from this and I'm on drugs for it. Thanks for the post and reminder.
  • Bob Hallberg   Nov 16, 2016 3:50 PM
    My wife Diane Southworth has had 26 hospitalizations over the last 4 years. I agree as a caregiver a medical advocate is sorely needed but that role unfortunately falls to the caregiver. The insurance companies don't have a medical advocate it's up to the caregiver and he/she just does not have the overall knowledge needed.
  • Calvin Welch   Nov 16, 2016 5:24 PM
    Yes MS YOU LEARN TO BE SO MENTALY STRONG THAT WAY NOTHING CAN BOTHER YOU, YES you can you just move slow its okay to take your time
  • SmartyPants196   Nov 16, 2016 11:21 PM
    My heart goes out to you as you find your way during hard times. Yes, everyone does need a medical advocate, and that one must keep pushing their doctors to keep looking for the root cause. You are a good advocate for your wife, and she appreciates it I am sure. Remember that God doesn't give you any path that you can't navigate. Stay strong, take care of yourself too. I have progresive MS, and after working 35 yrs in service to people with disabilities, I was diagnosed with MS. My MS was progressing, my job was literally killing me. I retired early and it's been ten years and i haven't progressed yet, i have a half paralyzed leg, fatigue (the Monster) and severe back pain. I am very active, I swim twice a week, i ride incumbent bike 8.2 miles twice a day and once a day i do bed exercises. I walk with walker or two canes. When i quit that highly stressful job, it acted to subdue the MS and so far I haven't gotten any worse. I also found that a massage every other week, kept my pain at bay five days afterwards, so I can enjoy that time without the nagging pain. Without my mate Mark, I don't know what i would do, he's been there at my worst days, when I was bedbound for four months, he did everything for me, even stood up behind me, holding me up so i could shower. Having a caregiver means the world to me, we celebrated our 23 yrs together. It's the love that keeps one going, we can get through anything. Peace to you. thanks for a great article.
  • Christine Kennedy   Nov 17, 2016 12:22 AM
    Thank you, bless you both.
  • Angie   Nov 17, 2016 9:05 AM
    Lots of prayers for you and your wife.... MS is so tough and takes a toll on everyone. All the best to you.
  • vivianegauvin  Nov 17, 2016 11:25 AM
    Very true. As much as I always end up wondering how much of my symptoms are MS related, it doesn't make them less significant or the need for them to be treated less important.
  • mike   Nov 19, 2016 5:37 PM
    Not only have I lost my way to
    Make a living but my of understanding friends have all but
    Disappeared , but so have my kids I am treated like a dummy people act as if I'm crazy and I need mental help people like to twist things and have no respect for me I am so tired of not being able to sleep right being alone no hope of getting BETTER THIS IS NOT LIVING TO ME THE WAY I GET TREATED TALKED TO BECAUSE I DON LOOK SICK ACUSED of being lazy I once owned success in everything I did now I can get to the starting gate even with my m.s. I can still do better then most .but now I get shut down because of m.s. have decided i.m going on a hunger strike i,m not saying anything to the ones around me then I am s each in for a place where it's peaceful in which I will have my last meal then I shall leave this cold world where people just use you until you have nothing more to give and I'll go see what's on the other side and see what they have to offer .I am not gonna keep losing my body my mind my independence and get to the point where I am unable to do this the time is now while I can still do it without anyone else's help I'm not crazy I have always felt this as the last resort when pain and hope is lost I say this to my fellow brothers and sisters don't fade away don't lose everything you worked your whole life for no when to get up and leave while you can still hold your head up .God bless I believe God will let me enter I have prayed for years been abused put in mental hospitals where I was beat and first time i.ve told anyone this out of shame raped .when I try ed to get help wanted to put me back in the same place no hope no choices I have decided to end this every moment of hell I live each day going to where no people are out in the country and leave this so called life






















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