80’s Music Rules ~ Devastating Illness ~ Churg Strauss Syndrome

PA260167I’m going to depart from my normal posting pattern and take the time to discuss something very personal and very disturbing that casts a shadow on my life each and every day.

 My better half suffers from a little-known affliction called Churg Strauss Syndrome (CSS). Over the past few years, I have helplessly watched this once vital and energetic man become slowed down, beaten down, and hollowed out by this awful and misunderstood disease.

 It’s something I wouldn’t wish on my worst enemy.

 CSS is one of about 14 forms of Vasculitis disease. Other related conditions you may have heard of are Wegener’s, Behcet’s, and Kawasaki (what John Travolta’s late son suffered from). It’s an autoimmune disorder that affects the arteries and major organs. The symptoms are many, diverse, and difficult to pin down as actually being a part of CSS.

 Hubby started out with what was thought to be a strange combination of rheumatoid arthritis and asthma, the onset of which occurred during middle-age. Other odd symptoms cropped up over time: weird little bumps that would come and go just beneath the surface of the skin, chronic sinusitis, low-grade fever, joint swelling, transient pain, high eosinophil count, frightening nodes that would show up on lung x-rays then quickly disappear. Each symptom would require a new drug, a new specialist, and a longer journey down a darkened road with no end in sight. Finally, in December 2005, hePA250095 suffered a heart attack.

 Shortly after, a very astute physician began to “connect the dots” and four years ago, hubby was given a diagnosis that would change both of our lives; the cause of all of his unusual and seemingly disjointed symptoms had a name. That was the good news of the “good news, bad news” epiphany we experienced. The bad news was, he was already in stage three and there was no cure.

 Music has always brought me solace, quieted my fears, eased my pain, and given me escape from a life that is sometimes downright cruel and difficult to deal with. Over the past several years, music, and the friends I have made as a result of my passion and love for it, have made dealing with my best friend’s, my companion’s, my soul-mate’s affliction just a tad easier. It is because of you that I’m not paralyzed with fear as each new day dawns; I can be strong, and in so doing, help my husband stare down a vicious and pernicious enemy. I can’t thank you (and you all know who you are) enough.

 These are just some of the songs that have seen me through. For my husband, my friends, and the music, I am eternally grateful.

 “Primitive Painters” by Felt via YouTube user mrbriefcasetv2:

 “Dark” by Gary Numan via YouTube user PatrickIngham21:

 “Soul In Isolation” by the Chameleons via YouTube user LeftHandOfDarkness:

 “This Big Hush” by Shriekback via YouTube user 1prosszto1:

 “Linoleum” by Tweaker (feat. David Sylvian) via YouTube user tonyreyes:

 “Ocean Rain” by Echo and the Bunnymen via YouTube user DrCheese01:

 “Violet Light” by Raised By Swans via YouTube user cloudtifa:

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18 thoughts on “80’s Music Rules ~ Devastating Illness ~ Churg Strauss Syndrome

  1. Just a friend from a long way off wishing you guys some “Happy Days”. Take one when you can get one. Some how I knew there would be an eighties link or two.:)I heard a couple words today in therapy for my accident that I wasn’t ready to hear “limited recovery”. I’ll prove them wrong no doubt, but at least I can recover. Stay strong you guys!
    sugar

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  2. Hey (((((((Blair))))))))

    Thank you for the kind words. You *will* come back stronger than ever – if not, I’ll come up there and kick your butt! 😉 Seriously, I know what a tough battle you’ve had, but your attitude and stubborness will see you through. It’s what has kept hubby going all this time. He refuses to give up. I could take a lesson or three from both of you.

    Get better every day and thank you for stopping by.

    Hugs,
    MissP
    xo

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  3. So sorry to learn this! I am glad that you’re able to find a measure of solace in music. Arts’ ability to transport us to other times and places is probably its most profound quality. Wishing you and he many more years of love and music.

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  4. Hi MissP,

    I’d like to commend you for coming out with this information regarding Churg Strauss Syndrome (CSS). Hopefully, by sharing your personal experience regarding your hubby’s disease, it will be helpful in making others aware of this rare form of autoimmune vascular disorder. I’ve yet to encounter a patient with CSS as I’ve only had 1 patient with Kawasaki’s disease, and that was almost a decade ago. What I remember were the sacrifices that the patient’s family had to go through to make the suffering of the patient bearable at the very least. For this, I admire your strength and dedication to your hubby and I pray for a miracle to happen. God bless and always keep the faith my friend.

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  5. be stong,

    be well,

    much love,

    and as i write denice is listening to some song, i don’t know what it is she says it’s ‘what made milwakee famous’ i think its called… and the words are ‘love sweet love what you need is love sweet love’

    may the golden light of love surround and protect you both.

    jason @ getyouoj

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  6. Hey ((((Joey))))

    Thanks for the kind words. My entire life, music has been my “fallback option.” I can’t imagine a world without it. And I am grateful for people like you that keep music alive and flourishing. 🙂

    Hugs,
    MissP
    xo

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  7. ((((McDoc))))))

    Thank you so much for your compassion. I really enjoy the contributions you have made to my musical world and am grateful to have you as a friend, even though we are (physically) worlds apart. Isn’t the Internet grand?

    Hugs,
    MissP
    xo

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  8. ((((((((Jason and Denice)))))))))))

    Your kindness and the warmth of every one in the Marsden Theatre has enriched Hub’s and my lives so very much. hoping you both have loads of sunshine and happiness – thank you for all of your hard work recognizing and publicizing struggling and very talented musicians. 🙂

    Hugs,
    MissP
    xo

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  9. Miss P.,
    Thanks for the beautiful words and I sure will look for the music you suggesting. My daughter got diognized with CSS when she was 5, now she is 6. With daily 12 pills, body cream, 9ml of syrup she is doing very fine. It was a relief when the doctor has tagged the disease after than already 3 years of hospitals. I assume you have heard about the CSS Association where you can find bunch of information as well share your thoughts with “lots” of others with same disease.
    Thanks again and lots of strength. It’s a battle but the wone that we will not loose.
    Take care
    Christophe

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  10. Christophe,

    My heart goes out to you. It’s a rare disease, but very rare that a child should have it at such a young age. I am so sorry, but I admire your courage to fight. My husband belongs to the Vasculitis Association and we attend local meetings to meet with others and share information. When he has to go into the hospital, he brings brochures with him that he gives to the nurses and staff to educate them on what he has. Keep educating your daughter’s doctors, friends and her schoolmates. The more that people know about this disease, the more help we may get to fight it.

    My thoughts and prayers are with you! Thank you for writing about your ordeal.

    All the best,
    MissP
    xo

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  11. Miss P.,
    Thanks for your reply. Indeed we have to spread out the word. I am Belgian but live for 12 years in Chile. Wish you and your husband a very nice day.

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  12. Again, Christophe, we are very grateful to you for sharing your story. Please give your little girl a hug from us both. You both sound very brave – stay strong!

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  13. Thank you ((((((fifty))))))) – the same goes for me. Hoping all is well in your neck of the woods.

    All the best,
    MissP
    xo

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  14. Pingback: Dedicated to the One I Love | URSA Photography

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