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To all who do not agree that there could be such a ‘beast’ as ‘night shade’ sensitivity:

May 6, 2016

*Warning…this a rant – a huge rant – against care providers that dare to devalue our experiences and/or diagnosis. It is not pretty. ~Amy

A few days ago I had a “health care provider” sweep into my journal on a wave of righteous indignation because their client came across my ‘night shade’ list and that person is not happy that my list is posted online. It seems that my list may have caused that care providers client to think twice.

I absolutely will not apologize for that.

Let me make something perfectly clear.  Do not come into my journal and spout off foolishness like the following: “(btw fibermyolgia isn’t a real disease just another pill to push just like thyroid disease and all the others)”

*My apologies for the misspelling. It is not on my end. I put this in as it was written to me.

I will shortly be 56 years old. I have battled chronic illness since my childhood. I was ‘diagnosed’ with fibromyalgia when I was barely out of my 20’s and I know full well that I was given that diagnosis because my medical team had no idea what else to call ‘it.’

Many of us that battle chronic pain illnesses that are lumped under the umbrella term of Fibromyalgia know this perfectly well. Do not insult me or anyone else by referring to fibro as a ‘disease’. We know it is not.

Do not insult us by implying that we are feeding into the FDA and big pharma. We are not.

Do not come into my journal and assume that I’ve only sought help and treatment from conventional medicine. You made an incorrect assumption.

Do not come into my journal and assume that I’m on a plethora of pharmaceuticals. Again, you made an incorrect assumption.

Do not come into my journal and assume that I’ve never sought help from alternative care providers. You would once again make an incorrect assumption.

Do not come into my journal and assume that the alternative treatments I have rejected I rejected because they were taken ‘wrong’ or without the correct oversight. Again, you made an incorrect assumption.

Do not come in here and ‘humble brag’ that you would love to work with me and provide proper nutrition, care, and oversight. You again make the incorrect assumption that I don’t already have someone on my care team that does just that.

Do not come into my journal and toss your credentials around over and over again. Trust me, those of us that live this life have had professional credentials shoved down our throats until we are blue in the face. Again, you incorrectly would be assuming that my care is not being overseen by professionals with similar or the same credentials.

My aunt died of Lupus. One of my cousin’s body makes no T3, three of my cousins and I have Hashimoto’s, my nephew was diagnosed as a child with a thyroid disorder and my sister-in-law had thyroid cancer, her sister, my other sister-in-law also has Hashimoto’s. If you have ever lived through the terror of a thyroid storm you would not dare to utter the inane foolishness that was spewed into my journal.

My granddaughter has Celiac disease, Type 1 diabetes, and Alopecia. I spoke only about my Hashimoto’s and Fibromyalgia, I haven’t added the other medically proven auto-immune disorders I have. Do you think my family has enough auto-immune disorders for you to take us seriously?

Do you really think we are into big pharma willingly? If you even think of breathing a ‘yes’ to that you would be very, very incorrect.

Between us all we’ve spent more time being scanned, screened, tested, and medicated to ‘choke a horse.’

I have finally been ‘released’ from twice yearly screening for Lupus. I have auto-immune disorders (one is ‘named’, the others are considered complications of having auto-immune disorders) and my care providers have never been able to completely ‘nail down’ exactly what is going on with me. Hence the umbrella term of “Fibromyalgia.”

I have surrounding me an amazing team of caregivers now. It took many years to pull together a team that I trusted. I can walk into any of their offices with a list or a printout and discuss with them my concerns when my body suddenly goes haywire again. Even if one of them does not agree with me, they will listen to me, and work with me. And that is exactly what my team did when I approached my last elimination diet.

I was told that technically there is ‘no such beast’ as a “Solanine sensitivity.” But my team was willing to monitor me and listen to me and more importantly they wanted to hear how things went for me.

At the time I did not allow all of the postings from the health care provider that came into this journal on their wave of righteous indignation to go online as I was mortified to realize that one of my care providers has similar credentials. And I think the absolute world of my provider – I absolutely do not want anyone to come into my journal and see fibromyalgia and thyroid sufferers devalued by someone with those credentials and then leave my journal with that in the back of their mind.

(After a lot of thought I decided that “care providers” interference and opinion is not in the spirit of this blog and was removed.)

The “practitioner” was “not okay” that I will not post or link research or views that oppose this page. With the click of a mouse, or a visit to a decent library, anyone can find an opposing view, in fact that is why so many do land here. They were searching for an opposing view.

So don’t badger me and claim that I am not being fair because I will not add your sincerely held viewpoint on this page. You, the care provider, should be providing that balance. And you should be providing that balance in a way that brings assurance and trust into the lives of those in your care.

What that “heath care professional” did not seem to realize is that when they posted to my blog, they logged-in with a social  media account, and as such they made available to me, the blog owner, the ability to see their e-mail and IP address (this is to help blog owners report spammers if the need arises). So I followed that person’s social media account link and I was not impressed in the least with what I found (*Warning, if you plan to wreck havoc with a blog owner as a ‘professional’ your link-back had better look professional at the very least.).

I should not have given that “health care professional” a voice in this blog. And so, for the first time ever – I have removed most of that person’s dialog, and all of that person’s link-backs.

So, on that note, if you come into my journal and do not like what you see, then leave. You will not be given a ‘voice’ in my blog if your intent is to wreck havoc. Simple. My blog, my choice.

This journal is not ‘finished’ and it may never be. Since I had started this journal I had a beloved family member diagnosed with cancer (I lost her in September of 2016), another member just underwent an emergency heart procedure (He is doing very well), another has aged to the point that we monitor her closely for health changes to keep her safe, and another is slowing losing his battle from the effects of his exposure to agent orange when he served in Vietnam (He is now in an assisted living facility).

Multiple elderly family members still need my continual attention, and I’m doing it all with very limited pain. As I said. My care team is awesome! They listened to me. They worked with me, and because they let me follow MY gut instincts I am a soon-to-be 56 year old caregiver living with the least amount of pain in my lifetime ever.

So believe me when I tell self-righteous care providers, don’t humble yourself into thinking you can help or ‘cure’ me. Don’t leave messages of pity that you are sorry you could not have the chance to ‘help’ me. Do not flatter yourself and post such ‘humble-brag’ foolishness on my page. My team worked with me to get me to where I am today – absolutely no righteous indignation involved, no devaluing me if they didn’t agree with me, and absolutely no condescending remarks ever.

And when my team could not find an answer I went in search of an answer myself and brought it back to them so they could oversee my care while I tried a different approach.

I do not have time for a foolish battle with an indignant care provider. Period.

For some of us Solanine sensitivity is a problem. We don’t fit into a nice neat little box. We probably never will. If you don’t agree with us. Politely shut your mouth and walk away. What does it hurt you if we choose not to put something into our body that we are suspicious of? It does not hurt you and you know that.

And don’t come in here and blame me if your client/patient is hesitant. Good for your client for researching, thinking, and following their gut instinct about their own body.

Those of us that live this life have seen more providers than most people could ever imagine; been asked to try more than our fair share of pills, herbs, plants, diet regimes and the like, as well as a dizzying array of alternate and conventional approaches … and let us not forget all the testing, screening, scanning and blood work we have endured. Our care has been tweaked, and amended, and tweaked over and over again. Ad nauseum. We do not need your condescending attitude. Period.

Another thing – exotics. They are expensive. Many of us are on limited budgets, we have to pick and choose wisely, and you would be surprised how often we put off the purchase of something to buy an herb, supplement or exotic blend that we hope will help us.

So I’m going to tell you all a story (and this is going to really tick off the provider that came in on that wave of righteous indignation if they are monitoring my journal hoping for another swat at me):

I was once on an herb that can only be harvested in South America. But I found out, two years into my use of that herb, that it was not being harvested sustainably, nor were the indigenous people being compensated fairly for their work. So I went online and started to look for a company that harvested responsibly and paid their workers fairly. I found one, and so I used them as my provider since at that time none of my alternative care givers happened to carry that particular herb.

While researching other treatments for what I was using that South American herb for (I was still feeling guilty about my use of that herb as I knew that even though I found a ‘good’ company, there were more than double that were not, and my purchase of that herb was feeding into a ‘need’ that companies were taking advantage of) I found out that there was an herb, local to me, in great abundance that should help me in the same manner and at less than a quarter of the price. So I went searching for someone locally that might carry it and two towns over I found a lady with an herb shop that grew, harvested and prepared this herb for her shop herself.

Now I’m not saying that local fresh herbs can always replace every exotic herb out there – but I am saying do your research. And do not let anyone put you on a guilt trip if you don’t want to use something that you are not convinced about.

One other thing about alternatives: Many of them are not covered by insurance, those of us that seek alternative care providers and remedies may not be able to hold a full time job. We are making a huge sacrifice. I have watched with horror as prices for various items have shot up exponentially due to ‘demand.’ I feel that many alternative remedy suppliers have fallen to the same greed for the almighty dollar as big pharma.

And as to finding an alternative provider, I have to pay full price out of pocket. I am one of the ‘lucky’ ones in that my insurance covers one of my alternative choices, but to go to a provider of their choice is a highway drive of two and a half hours one state over. Not something that is acceptable for a chronic pain suffer. So I found a provider closer to me, but she and I would have to jump through so many hoops for even the remote chance that my insurance would cover at least part of her care to me that I decided not to put the both of us through more hoops. So I pay out of pocket.

But! My medical flexible spending account will cover my visits if I so choose. My provider does not have the machine that can take my medical FSA card, so I have to submit receipts to be reimbursed. But on a week when I wasn’t going to have enough money to see my provider otherwise, I have the option of seeking the reimbursement.

Those of us that live this life make extreme sacrifices, often while trying to maintain very worn out and pain riddled bodies. We have to navigate though a mountain of paperwork, tangled networks of office personnel (that often have no idea how to help us fill out that required form), sit through hours of obnoxious music on the phone while waiting to schedule appointments, and miles of hallways and highways to get the care we need.

So do not come into this journal and make anyone that lives this life feel guilty because one of us decided that we didn’t want to navigate down the path you chose for us.

I want everyone that ever stops into my journal to use your mind. I question, question, and question some more. I research for hours sometimes. I am insatiably curious – and I know what has worked and what has not worked for me over the years. I keep notes and I bring them with me when I need to head off a problem with my body with one of my care providers.

And especially, if you have a choice and do not feel comfortable with someone on your team. Get a second opinion or go seek out someone else.

My first rheumatoid specialist was amazing. He was a researcher that was on the leading edge of research for alternative therapies. I never once walked out of his office with a prescription. When he retired the hospital set me up with a ‘fresh out of school’ specialist that declared at our first meeting that there is no such thing as fibromyalgia and post-lyme syndrome and she sat down to write out a couple prescriptions for me – I walked out of her office before she ever got her pen out of her pocket.

I was sent to an endocrinologist that was considered one of the best in this area. It took me two days to fill out his questionnaire prior to my visit. He sat down, flipped through it, asked questions, but didn’t really ‘listen’, tossed the questionnaire aside, asked me about my other providers, again didn’t really ‘listen’ – snottily ran off his credentials to me, making it clear that he and only he was going to provide my care and then asked me: “So, do you want me as your doctor?” I looked him in the eye and firmly said, “No.” He was shocked when I then got up and walked out of his office.

One of my other specialists flipped insanely fast through my records, wrote a dizzying amount of notes in the margins, peppered me in high gear with questions, grunted in acknowledgment – and then stunned me silly when 20 minutes later he ordered a battery of tests after telling me what he suspected. When the results came in…he was correct and I had another ‘piece of my puzzle’ worked out.

My point is, if you don’t like how someone is treating you, and if you can choose to seek out another provider, do so. If for some reason you cannot, and believe me, I know what it is like to either be stuck in an insurance plan you cannot get out of, or live so far away from alternative providers as to make finding another one difficult, then speak your mind! It is YOUR care – not their care.

I am doing great because I stopped letting other people walk all over me because they had the credentials that I didn’t. I am doing great because I was able to assemble a health care team around me from multiple disciplines that care about my outcome and me. I am doing great because I was not afraid to research, and follow my gut – even if my process led me ‘out of the box.’

Don’t ever give up seeking answers. Ever.

With healing thoughts for you all as you journey towards better health,

~Amy

*Updated to reflect the loss of my mom – and now kept in her memory, it may seem odd to honor her with “fightin’ words” … but my mom was a fighter, she overcame much throughout her life, and she is the one that taught me to fight tooth and nail for what I believed in. From my youngest years up until a few months before she passed away, she was the one that drove me to see all the specialists; have all the testing done, to the ER when the doctors were wrong and I reacted badly to medications, or during the times when the muscle spasms were so severe that I was bent into a human pretzel. She was with me through all my surgeries and medical procedures, she was with me the day the doctors thought I had MS. She endured every inch of my pain-filled, illness laden, journey with me. Cheered me on when we finally got answers, and held me up when the battle was exhausting me to the point of wanting to give up. I never did.  And it was because my mom never gave up on me.

Thank you mom.

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7 Comments
  1. michelle permalink

    a great entry. the highest credential is owed to the patient.

  2. deb sofield permalink

    More power to you – I am happy you took the time to explain and then give your suggestions – preach it loudly friend

  3. Elizabeth Ostenberg permalink

    Thank you for sharing you thoughts, opinions and knowledge. You are a super strong woman!

  4. Katrina permalink

    This post/your mindset is amazing and I’m so happy to have gotten the chance to read this. I completely agree with you and I do it myself despite people’s discouragement for the same reasons you’ve listed. Hope things continue to go well for you 🙂

  5. Lisa permalink

    Thank you for sharing your experience. I am so sorry to hear your/your family’s struggles, suffering, and losses…

    By the time I was 30, having already eliminated some major sources contributing pain, joint swelling, frequent headaches, skin problems, digestive issues, and fatigue by eliminating wheat and then corn, my joint pain was so severe and my hands so weak that the pain in my joints when first standing and moving in the morning was almost enough to induce tears and I began to struggled to do something as simple as open a jar (understand, I am not a person one would typically describe as weak or dainty). It was at this point of suffering that I did an autoimmune geared elimination diet, and discovered that avoiding nightshades like the plague reduces my pain by at least 85-90%.

    I got burned today, having purchased some protein powder yesterday, reading the ingredients several times carefully first, then having it in some almond milk for lunch and a little while later having my hands become puffy and stiff. I came home, read them again, and was still mystified- it was only upon googling some less-familiar sounding ingredients that I discovered a nightshade called by a different and unfamiliar name in the ingredients, that it made any sense. I tell people who don’t understand my reticence and caution at restaurants that it’s always a risk, to eat anything I don’t make myself. Someone important to me who looked at me like I was kinda nuts when I mixed and took my own salad dressing to a restaurant in a little Tupperware container, finally seemed to get it when, in part to find out and in part to prove a point, I asked a series of questions too see if maybe they had something, anything, free of all that I avoid to be in less pain, and discovered that they didn’t. He even said something like “wow, it’s really difficult for you to get what you need”, and didn’t bat an eyelash as I pulled the salad dressing out of my bag. Like yourself, I have Hashimoto’s, and when very young had Kawasaki’s disease, now believed to be an autoimmune disease. My sister suffers similar symptoms with such foods, and I have family members who also have autoimmune thyroid diseases and other things (celiac, psoriatic arthritis, etc). I’ve had RA antibody tests due to joint symptoms, which are fortunately negative so far, but I don’t doubt that my joint and previous skin symptoms are likely autoimmune in origin. And I don’t have the time and patience to be ignored and/or told that if I just lost weight, I’d magically be fine. What I eat has such an extreme impact on my pain level. All I can do is nod and wave off comments I hear all the time like “I couldn’t live without _____, I would just eat it anyway” or “you have so much willpower” (while declining food at work events). And I think to myself “If you knew the kind of pain I am avoiding, you could live without almost anything” and, “If you were declining the offered food so that you don’t have to live on NSAIDs and can function instead of because you’re getting ready for swimsuit season, you’d have this much willpower also…”

    Pain is an old companion- having had legg-calve-perthes as a child and, as a result, already experienced the unique and horrible feeling of bone grinding on bone and then a total joint replacement (thankfully, as it’s so wonderful to have legs that are the same length and to walk without knowing a deep, stabbing ache that will only increase). I mention this to emphasize that, while pain is absolutely an individual and subjective experience and everyone’s pain is valid, my personal gauge is is relatively… well developed, and I wouldn’t wish the tolerance I developed for pain while pushing through daily life on ANYONE (with the possible exception of the particular brand of dismissive, omniscient ilk of healthcare providers you refer to, and that I have also had the misfortune of experiencing numerous times). Because as you know that pain is draining, its exhausting, and when dismissed or unwilling to accept the non-answers thrown our way, many of us would try almost anything.

    Wow, this turned into a rant. Thank you for sharing your thoughts, and validating and speaking up for others who struggle with similar issues.

    • Hello Lisa,
      Thank you for stopping in, and especially for sharing your experience. And for you care and concern.

      I don’t consider your post a rant at all. It is not for those of us that live this. If I had a penny for every time someone told me I was being ‘picky’ or ‘difficult’ because I would not eat even ‘just a little’ of something that I suspect or knew was a trigger, or because I had read over the ingredients or side effects of something (medication, herbs, etc) and decided that particular item was not for me…well, you and I both know we would be rich! And if we had a penny for every clueless, dismissive, or worse, rude ‘health care provider’ that crossed our path…

      I did a search recently and was surprised to find that searching for solanine toxicity, and nightshade toxicity articles brought back pages and pages of results. When I first suspected yet another food trigger for myself, and that being ‘nightshade’ plants, it was difficult to find any information.

      It saddens me that so many suffer, but I’m also very grateful to see that less and less concerns about ‘nightshades’ being a trigger for many people is considered “all in our heads” by fewer and fewer health care providers. I was particularly happy to see so many well written articles by nutritionists, naturopaths, and even a few conventional medical doctors.

      We are being ‘heard’ and our concerns are being addressed with respect more and more often – but there is still a long road ahead for many of us.

      Best to you,
      ~Amy

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