Not My Child

Alone

Alone (Photo credit: Pink Sherbet Photography)

I went back to my Rheumatologist today with the help of my husband, driving me in to the city. This summer I haven’t had the energy to be able to take a train anywhere much less drive to the nearest train station. I’ve been so tired and so filled with pain that I can’t even imagine the days of yore when I used to go to the city by myself FOR FUN, for excitement, to sit, grinning, sipping iced coffee,watching people or seeing a new movie. I cannot manage the steps up to the platform or down them, I can’t even think of the service elevator that grumbles so slowly and so infrequently and is so small, smelly and lifeless.

The quality of my life, in the last six months, has deteriorated, rapidly. I’ve tried to keep it out of my head, to ignore it and not to complain but the evidence is clear now. I’ve fallen, out of the blue, directly unto the ground smashing my face and knees, I’ve been severely imbalanced, I’ve even used a cane that I keep in the car. My pain levels are at an all time high and I complained to my doctor that I thought Fibromyalgia symptoms were supposed to stay the same, not get worse. “They get better, they get worse” he said diplomatically, this being the worst he has seen me in years. Cranky, unsmiling, complaining and saying “ouch” every time he touched a tender point on my arms and legs. I hurt everywhere and then some. I have interrupted sleep, pain wakes me up so I don’t get enough rest to heal during the night and I’m frustrated, angry and sick of it. It’s almost six years now.

The only thing, THE ONLY THING, that shut me up quickly today was the sight of a mother and her daughter sitting in the waiting room today, noticing that the daughter was the patient. I will remember this daughter’s face forever. She looked definitely younger than her years, she said the word “bi-coastal” at least five times, almost to prove out loud that she did live away from her mother. She looked about 15 but was probably in her mid twenties. Her two braids made her look younger, the sound of her high, squeaky voice sounded child-like and the way she moved looked awkward, clumsy, painful; something was definitely wrong, missing. She stepped gingerly into the doctor’s office alone like a wounded fawn.

I shut up completely, quieted my misery when I saw this young woman, this frail young woman.  I would have this frustrating disease called Fibromyalgia five times worse if it meant my daughter or son go through it. I would have it worse for this young stranger I had just met.  I looked at my husband and he looked back at me, we understood each other. I stopped feeling sorry for myself in a quick, NYC, second. Let me have the pain, just spare the children, I can take it, I will take it, just let them be healthy and happy and let this poor young woman find some answers and relief too. I am a mother, I hate to see any child hurt and suffer. I hate to think that this young wisp of a woman feels anything like I do. That would be so wrong, it upsets me deeply.

10 thoughts on “Not My Child

  1. Laurie, I want to stress to you that Hope is NOT lost as you titled a previous blog. From what I am gathering, while your doctor may care & want to help, I don’t think he’s particularily knowledgeable about treating FM. You should have been on Lyrica a couple years ago, for instance. There are doctors who specialize in FM, and they have many tricks up their sleeves that can stop the downhill slide and even reverse it for many, simple stuff like finding out if you have leaky gut syndrome (extremely common in FM patients) and eliminating the foods you have sensitivities to. Every system is tied in together, so food sensitivities lead to inflammation system wide, which equals PAIN. Finding out your EBV & HHV viral level, and starting you on an anti-viral could help tremendously.

    There are also supplements that can help, especially adrenal supplements, and I would hope somebody has checked your vitamin B12 & vit D levels. By combining the correct supplements and meds, you could certainly have a great reduction in the pain you are in, as well as a reduction in the fatigue.

    When I was newly diagnosed, in 1999, I was barely functioning. Three rheumatologists later, I found one who knew her stuff, and I had many years of being able to work before the Lyme took me down. I think it would be a terrific idea for you to look for a doctor who specializes in Fibromyalgia and is known for using complimentary therapies.

    I’d been working on a post about doctors and rushed it to posting so you could read it. It’s part of a series I call Ash’s Advice. The post about doctors is here:
    http://wolfdreams.wordpress.com/2012/09/14/ashs-advice-part-3-on-doctors/

    Have Hope, sweet sister – I surely have Hope for you, and will help you find the Path. Much Love.

    Ash

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  2. Laurie, first, I’m so sorry to hear that you’re feeling so much worse. It’s not terribly unusual after a hugely stressful event, especially an extended stressor, like you went thru last year, having to live in the hotel for so long, plus the loss of your beloved dog, to have a big flare of symptoms, and that can take months to resolve. With fibro, as with ME/CFS, there are good days & bad days, good weeks & bad weeks, but also sometimes good years and bad years.

    As for fibro staying the same… I know many people who started out with a diagnosis of fibro, but who got progressively worse. At some point in time, when the exhaustion became severe, their diagnosis became both FM & ME/CFS. And ME/CFS is definitely progressive in the vast majority of cases. Some of the leading experts look at it as a relapsing/remitting illness, but for most of us, it is a steady downhill, sometimes slow, sometimes fast.

    Most of the people I know with ME/CFS & FM dual diagnoses are on opiate pain meds. Doctors usually start with the lighter ones but many wind up on oxycontin (as I am). Lyrica is helpful for many & I take it, too – it really does help with the back pain.

    Your doctor should be checking much more than your thyroid (did he even order Free T3 and Total T3 & T4?). What are your EBV titers like? Have you tried an anti-viral? Have they checked your cortisol? I could go on & on.

    And about the children… my daughter, Rhiannon, was diagnosed with CFS and myofascial pain syndrome and adrenal stress syndrome when she was 12. She had had an extremely stressful event with a lot of sleep deprivation that was her trigger, but I had seen signs of it in her earlier than that.

    One study I read said that 28% of the daughters of mothers with fibromyalgia or chronic fatigue syndrome will develop it, usually between ages 10 and 14. I know many mother’s & daughter’s who have both been hit. Rhiannon is doing far better than I am, but she can’t go to public school, due to the pain, exhaustion, and her being nocturnal due to adrenal issues.

    Yes, it breaks a mother’s heart when it happens. All I can do is pray that some of the research being done will be helpful for her, and try to guide her along the way. She’s been going to my doctor appointments for years, and so is quite fluent in our illness.

    She is also the wisest person I have ever met, having been thru more in her not-quite 18 years than most people go thru in their whole lives. The illness takes away a lot, but many of the young ones with it are like this, from what I’ve heard – wise beyond their years.

    Sending much Love & hopes that you can find some answers, and get to feeling better.

    Ash

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  3. The Rheumatologist wants to add Lyrica and some type of stimulant for energy. I’m not starting anything else yet. Have a physical with my Internist next week and will see what she says, or rather, blood results say. Not in a good place though. Thanks all for caring.xoxo

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  4. I’m so sorry to hear about how much pain you’re in Laurie, you know I understand what you’re going through and I also understand what you felt when you saw that young woman. It’s just heartbreaking.

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  5. Laurie — my heart goes out to you — my prayers of healing energy are lifted up as well for you as all those who have unexplainable conditions. I understand what it feels like; and as I do not have any children (of the human variety), I have offered my invisible disease up so a good friend of mine can be spared further heart deterioration requiring a heart transplant. Gentle hugs to you. I hope something is figured out for the instability of balance. xo

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  6. Laurie,
    It sounds like something else is going on Laurie. Your fibro symptoms getting more and more severe to the point of no balance. . . I’m worried about you. This is not the “normal” fibro trajectory. (whatever normal is)
    What did the doctor say besides that response he/she gave you?

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