I have a deep dark secret

It is not that gluten-free eating saved my life (or that I used to be morbidly obese). It is not that I am still shocked that cancer sucks. It is not that my heart is still broken over Blondie.

It is also not that I am pregnant, nor am I engaged, switching jobs or launching a cool new project (ok I am sort of doing that).

I am also only sharing this with you because it is the reason for the delay in my second ebook. And because it caused me to almost quit blogging.

Here goes: I suffer from a rare, chronic, progressive and incurable neurological pain  disorder called Complex Regional Pain Syndrome (sometimes called Reflex Sympathetic Dystrophy or CRPS/RSD).

CRPS Sucks

It is widely accepted that this is the most painful condition that exists. And unlike child birth or the amputation of a finger, this pain is unrelenting. I don’t remember what it was like to not be in pain. (This is an excellent article about life with CRPS/RSD that profiles a blogger I follow).

I am in so much pain I cannot shave my legs. Or wear real pants (I am on a one woman quest to keep leggings in style, please help!). I haven’t gone for a pedicure in over 2 years because I am afraid of the nail technician touching my leg even if I tell them not to.

There are days when getting on the train is a traumatic experience and days when just walking on the treadmill results in tears of frustration and pain. I can’t swim in an ocean or a lake because the water is too cold.

There are times when the pain is so intense, I have no idea how the last 4 hours passed. I get to work in the morning some times and don’t remember even getting dressed. I say and post things on the internet that I don’t remember. This is what I refer to as pain brain.

How I got it

I blame a series of unfortunate events.

There was a car accident (after which I wasn’t supposed to be able to walk).

Then there was a running injury. A girl who wasn’t supposed to be able to walk again hurt her knee while running at a 9-minute mile pace.

Then there was the bruise from a coffee table that never went away. The pain just got worse as the bruise faded.

There is now constant fiery pain down my left leg.

What I do for it

Currently, I take 3 different kinds of medications, all of them controlled substances. I use a topical cream prepared in a special pharmacy that contains different narcotics and nerve inhibitors to help things like the breeze from increasing my pain level.

And I have a spinal cord stimulator. That means there are 2 wires floating in my spine connected to a battery in my back. I have a remote control that changes the frequency of an electrical pulse that interrupts the nerve’s pain response. I have to spend at least one night a week laying still to charge. Like a cellphone.

I have had over 20 nerve blocks, an epidural pain pump and countless hours of physical therapy. I have tried following an anti-inflammatory diet which had a negligible effect on my pain since I was already gluten, nitrate & preservative free. I have tried b12 shots and desensitization therapy. Some days I consider leaving the states for experimental treatments that are only available abroad.

Every day is a war with my body so that I can keep it from getting to the point where I am no longer able to walk. I swim because it is the workout that hurts the least and I have to keep using my muscles. I refuse to be 30 and in a wheel chair. I can stop it, so I will.

I spent 2 years holding it together after my diagnosis so that I could protect my mom from worry and shield Blondie from the possibility that I was damaged goods. I didn’t want anyone in my office to know because I just wanted to be normal-ish (having food allergies makes me different enough). Three weeks ago, I crumbled. I couldn’t hold it in anymore. This disease was winning because I had never shown up to the game.

Why it almost caused me to quit blogging

When I was finally ready to deal with this disease, I reached out to another blogger who suffers from this condition on twitter. And I mentioned that I understood being chronically ill. And that some days I feel like an 80-year old with all the medication I have to take. That was my biggest mistake. My secret was out. The world could see that I take medicine. I should have sent her a private message, and then I wouldn’t be sitting here writing this post.

[box type=”info”]The blogger I mentioned emailed me concerned that she was the problem, so I want to make sure it is clear that I am happy I reached out, it was someone who “overheard” the twitter conversation that I am referring to here[/box]

People forget that they are people when they are online. They can act as if their way is the only way. Or they will be just plain rude.

It is a very vulnerable position to be in, letting the world know what your world is like behind the curtains of the internet.

This is not like the people who think I am wrong for enjoying distilled alcohol on a gluten-free diet. Or like the comments I sometimes get about how I am not a true gluten-free person because I use grains and dairy. This was more personal than that.

A complete stranger felt they could recommend that I change my diet and go off of medication and I would be cured, because their diet cures everything and western medicine is evil.

Evil. 

The few things that are helping me hold on to a normal life with a 9-5 and a crazy fun set of hobbies and friends are being called evil by strangers on the internet. Medicine helps me people. And I would appreciate it if you would respect my decisions to trust the doctor I am currently seeing.

I was offended. I was hurt. Medical decisions are personal, just like food choices.

I am telling you that I am sick, not for your sympathy, but so that you can see how judging my treatment choices like that hurts.

Just as you judging me for the food I eat is inappropriate (Shauna wrote a great post about this), so is telling me that my diet is the cause of the pain. I did not make any of these choices lightly. They are the fruits of a decision making process that involved multiple opinions, referrals and hours of research. I have to believe that there is hope for me, and I have to believe that my doctor knows how to treat this. Or else there is no hope left.

I am not ready to go there yet. I am 28. I have a life to live. 

I envy people who’s lives can be turned around by changing their diet. My friend Amie is proof that food is powerful medicine and can be a horrible poison. Heck, food changed my life. But this time, it isn’t so simple.

I am using food as medicine, but it can’t replace all of the medicine prescribed by my doctor. I have increased my intake of anti-oxidants and b vitamins. I have decreased my caloric intake. I eat whole foods. I avoid chemicals as much as possible. I go to the gym and fight through the pain.

On the other hand, cupcakes have theraputic properties. So I am not going to give those up completely. Ever. Sorry.

I have an excellent medical team. My allergist, neurologist and anesthesiologist (pain specialist) are working with me to help me build a healthy and full life. And I am going to keep taking medicine that makes a positive impact on my quality of life.

If a friend of yours suffers from a chronic illness, do not offer them unsolicited advice. What they need is support. A shoulder, an ear. Not a lecture. 

And the ebook?

A major flare left me unable to finish photographing cakes and formatting the book, I am postponing the release until August 15. But you won’t be disappointed. Until then, there is still the gluten-free cookie ebook!

So the project I mentioned

Sample images from my Chronic Positivity Challenge

If you follow me on Instagram, Pinterest, or Flickr, you have seen parts of it. Three times a week, I will be posting an image with a quote or illustration of something positive or inspiring that speaks to me. It is part of a quest in the online game SuperBetter. (I will write a post soon about how this can be an incredibly useful tool for handling a celiac / gluten-sensitivity or food allergy diagnosis).

In conclusion

It is time that we all accepted each other and their decisions regarding how they take care of themselves.

I might tell you that from experience changing my diet changed my life. And food is powerful medicine. I might want to hear from you how when you went dairy free a fog lifted that you didn’t know was there. I want to know that how you eat makes you feel good. Because how I eat makes me feel good.

But I am sick, and the treatment plan I have chosen is not up for discussion. Now, let’s make some cupcakes, shall we?

 

 

121 comments

  1. Sophia says:

    You are so strong! Damn those haters, don’t let them tell you otherwise. Everyone has their secret. You are the strong one to let others in.

      • Nicole Darcy says:

        I just came across your article, this just brought hope to me, truly did. I’m at a crossroad with RSD myself just diagnose a little over a year ago and its a very tough road, thank you for your positive writing!

        • maryfran says:

          I’m so sorry to hear you are struggling with your diagnosis! I know it can feel like a sentence of life in prison without parole – but there is hope! The disease has its ebbs and flows and there are treatments that can help manage the pain – I get nerve blocks regularly so that I can continue to work and blog.

          Stay strong! Gentle hugs! And know that you can always email me!

      • Ed Stines says:

        I just came across your article and I think I just discovered something and it is scaring the crap out of me. I have crps and I have been hurting bad. I got it from a knee replacement surgery went bad and it had to be repeated three time plus the usual blocks etc etc. Sorry I am trying to type fast because I am excited. I think I am lactose intolerant and because of crps my taste buds are messed up, so I love ice cream. To come to the point, could ice cream be causing the flares I am experiencing?

        Yesterday my doc and I decided to increase my meds particularly fentanyl and this morning I felt great for the first time in months. I went for a bit of shopping, just came home, had some ice cream and started to relax as best I could. My leg was flaring,took some meds and just took my pants off because it was irritating my leg. My leg is swollen, splotchy, shiney, thin skin, the usual stuff.

        It just occurred to me, could the ice cream be causing this horrible flare? Could it be the source of my 3 years of living hell? Naw, that’s impossible right? Oh gawd, I really need to go back and look at previous times to see if there’s any relationship I can identify.

        I hope you get this email and you could get back to me. Sorry if I interrupted any of your holiday plans and I appreciate your time.

        Thank you very much,

        Ed Stines

  2. Maria says:

    I am strongly against prescription drugs, big pharm and the evils of our toxic food supply… and yet, I take a prescription med, as well as my son and husband… sometimes you need to live and not just be idealistic. Stay strong!

    • maryfran says:

      The world would be easy if we could see everything in black and white.

      I appreciate your honesty & support!

      • stacey says:

        wow I read what you have said and all i could think is of my 14yr old.. she was 11yrs old and world army crawl just to get to the bathroom due to body pain..after being sent to childrens hospital in pittsburgh we was told she had (CRPS/RSD/RND)…next step was not meds but to do hard core physical therapy she was in so much pain from it but in the end it helped her so much…the docs said she got this from a fall in her cheer practice. we was also told that any bump, bee sting,fall, ect..could act it back up again so she does moves every day from therapy to beat it…..anyone who has had to deal with this is a very stong person..I let my daughter read this and she hopes the best for you and will be looking at you blog alot. we are so happy to have found someone who has gone down a lot of the same path as our family. from my 14yr old to you KEEP UP THE GREAT WORK NO MATTER HOW BAD IT HURTS CUZ WE CAN BEAT THIS WE ARE GIRLS AND WE ARE STRONG. ok now I have to get back to looking at ur page you rock.. 🙂

      • Rob Price says:

        Hello!
        I’m glad to hear something real from a fellow RSD survivor. I have it in all extremities and just reading a detailed description of our daily life makes me feel less alone. People are very insensitive and I’ve certainly lived with the frustration of people telling me what I need to do. I want even go into the “drug problem” label that people are so quick to.
        Add me to anything you are putting out. I’m 48 years old. I’m doing better than surviving but I’m a far cry from thriving. I was formerly an overachiever with a highly decorated professional career. I’m still learning the new me and accepting my new reality. Iam going to implement a diet overhaul to try and get some relief. That’s how I found you!
        Stay strong! (I’m allowed to tell you that….😀)

  3. sally says:

    I understand where you are coming from I have both rheumatoid and osto arthritis. I am on powerful meds so I can function. And no changing my diet did not help

  4. JudyB says:

    You are strong! This was a condition I’d never heard of till helping a friend. She was diagnosed with this after a surgical procedure on her hand that apparently was the trigger for the CRPS. Her surgeon did not get what she was going through after her surgery & what should have been a simple recovery. I spent a over year chauffeuring my friend to various DRs. to get a diagnoses and then treatment. The spinal implant was not an option for her. After many doctors, therapy, medications & several nerve block shots in her neck, she can function but will never be completely free of this. She will be on meds probably forever. Her original pain was so bad she could not stand a feather brushed against her hand. What you are going through is a real, horrible, condition. My friend has been told to avoid ANY surgery, and not to have even blood pressure readings on that arm because it could trigger it back to the extreme level it started with. Hoping your condition will improve some over time. Don’t listen to anyone who doesn’t believe what this is like!!!

    • Ed Stines says:

      I wish I could vote your letter up and down since this is exactly what happened to me except in my left leg. I hate this disease and is just grasping at any straw I can find to try and stop the pain and symptoms. I feel so ridiculous when I go out and it is cold I roll up my pant leg and the other is down, looks kinda silly but when you are pain, you really don’t care what you look like.

      I really wish your friend the best because we are going through hell and I am not sure that we will ever feel any better. Hope is the only thing we have left and if that is taken away, i have nothing to live for. I use meds for fear of any more invasive procedures or any more implants to be put in me. I only hope that one day your friend and the rest of us will be able to have a normal life again. Happy holidays.

  5. Lauren says:

    Thank you so much for sharing your story. It is so nice to hear another 20-something-year-old going through a similar struggle with a chronic illness and living gluten-free. I will definitely follow your blog! If you are interested, I share my journey and some g-free recipes on my blog as well at thedailychronic.wordpress.com.

    Stay well!

    • maryfran says:

      I am definitely going to add your blog to my list, I just read your about page and can see what a remarkable young lady you are.

      Meeting people like you makes the risk of being this vulnerable worth it.

      Thank you for your support, and I look forward to getting to know you!

  6. Jenifer says:

    A beautiful post. Please stay strong. People are mean. They suck. But not everyone is mean and not everyone doesn’t care. I guess the challenge in life is finding the ones that care and are genuine and supportive.

    I hope the best for you.

  7. Ann Boskovich says:

    I too live with chronic pain, a congenitally malformed spine, that as I age, degenerates. I also have a pain syndrome. I am a member in good standing at my pain clinic and PT.
    I get it. There are days when even my hair hurts.
    I too am on narcotics and therefore treated as if I was weak moraled and lazy. My world has become smaller. My collection of pain management techniques continues to grow, which helps me a great deal.
    Life is sweeter in all the small ways. I haven’t given up, but I had to accept changes to improve my pain.
    I have no advice. I will not tell you to buck up or try harder (I hate that!). I only want to say you are not alone. And Yes, it sucks!
    I so hope your journey becomes easier.
    Yours in pain, Ann Boskovich Seattle

    • maryfran says:

      Thanks for not telling me to buck up but for letting me know that I am not alone. That is the worst part about pain, it feels so isolating at times.

      I am sending healing wishes your way!

  8. Robin says:

    I try holistic first and if it doesn’t work then I go with conventional. I wish diet and exercise cured everything but it doesn’t. People want to believe it can because then they don’t feel vulnerable to things outside of their control. Love em and leave em

    • maryfran says:

      Cathy-

      I understand that some are out of love, and those I don’t mind. I was reacting to the people who think you are less of a person if your treatment choices don’t align with their ideals. The ones who called my treatment plan evil.

      Things said out of love are usually a totally different story. And I hope that I don’t alienate anyone that would want to offer support, as long as they can accept the decision that I make in the end.

      And thank you for the blessings & support!

  9. Debi ford says:

    I am so sorry you have to go through this. I also have chronic things and people can be idiots. Ignore them and follow your own path. My heartfelt positive thoughts are with you-you will get throught this and hopefully with as little pain as possible.

  10. carlie says:

    I gotcha dear!! Yes, farmacy is better the pharmacy for the sins we commit as a modern society. However, Medicine; the practice of and Medicine; therapy of; has its place. All those nay sayers—- when they need or their children, loved ones real medicine due to an out of control disease, an accident or some other fateful happening, I hope they remember all those they bashed. Pay back is a —– and what comes around goes around. Only some people are paid back times 100. Keep at it and maybe your medicine that is food will fulfill the missing link and your medicines will be reduced.

    • maryfran says:

      Carlie, those are my thoughts exactly. Fix what you can with food and natural things, but modern medicine exists to fill in the gaps.

      Thank you for your support!

  11. Cassandra says:

    Wow! Thank you for sharing. I have been battling migraines and daily vertigo for over 13 years. You are so strrong!! I did the medical route first as anyone should and it turned out it was not the right path for me. I now do a mix of alternative therapies that are helping me live life a little easier but I never give up on the idea of a life without vertigo. If you are interested I would look into brain integration (crossinology). I have had a coulple sessions and it is definitely helping. It is about improving brain function. Anyway, keep up the good work. You are inspirational! 🙂

  12. Kellie says:

    Thank you for sharing your story. I was in tears reading it as I know the pain of a chronic illness. I have Crohn’s disease. I still shudder when I say that. It has changed my life and some days Crohn’s wins the daily battle but I am learning to fight back.

    Bless you in your journey.

  13. christy says:

    Shauna linked to your post today and you spoke the words I haven’t had the courage to speak yet. My body is incredibly fragile, my knees were not formed properly in the womb, and I have multiple food allergies. Recently my orthopedic surgeon decided that the best way to keep me out of a wheelchair was to remove my left patella. The backlash I got from friends and family members was amazing. “If you do this, try this, eat this… you will feel better!” was the common refrain. So was “surely you can’t be in that much pain”. And my personal favorite, “If you just try physical therapy, you knee will be better again”. I have been in physical therapy off and on for the last 9 years and the last 18 months straight. My physical therapy team is excited about the surgery and recovery. But the comments hurt. People don’t realize that we make the best decisions possible for ourselves. We do not ask to be in pain, we just ask for love and support while we face impossible choices. Diet only helps so much, physical therapy is another element and so is Western medicine. I will never stop fighting for my mobility. Thank you for having the courage to share your battle with the world.

  14. michel says:

    I find the troll in my own head to be at least as discouraging as the ignorant public. If I could just suck it up, try harder, march on soldier, etc. After YEARS of chronic debilitating migraines, I finally, just in the last 5 months have been free (mostly) from pain. No one who hasn’t experienced a chronic condition can imagine how every facet of your life is affected. Every decision is weighed by “how much will this cost me physically later”? Living this way had so changed my ‘normal’ I didn’t even know what healthy felt like anymore. Freedom/health is an AMAZING, rapturous thing! Best of luck and breakthrough technologies to you! Thanks for choosing courage and vulnerability — it’s worth it!

  15. Lisa M. says:

    In a perfect world, none of us would suffer hurt or disease. But the world is an imperfect place, and you do what you have to do to make it through the day. I’m sorry people who don’t know you felt the need to belittle your choices. You’re a strong woman to fight the fight you do, and you are absolutely right – cupcakes are therapeutic.

  16. sarah says:

    Great response. I love your positive attitude and respect your decisions and your strength. I never post, however I have to ask if you’ve tried or heard of the research behind vitamin C for CRPS? If you’re interested, I can send you the meta-analysis. I know you’re tired of people putting their nose where it doesn’t belong and that’s not my intention. It just had great results according to the research and I can’t help but bring it up just in case it could help reduce your pain.

    • maryfran says:

      I think I had read something a while ago, but my last doctor didn’t give alternative therapies much thought. I actually don’t mind people sending over real research, it is completely different than the kind of suggestions I was referring to. I would love to read it – my email is howdy@frannycakes.com

  17. Debbie H says:

    I have a friend suffering from the same condition. His pain is located in his lower spine. He is fortunate to get respite when he lies prone, so he is able to sleep. Otherwise, I don’t know how he functions. He had the TENS unit but it had to be removed due to an infection at the site. He takes a cocktail of narcotics which barely touch the pain. I have nothing but admiration and awe for him and for you — and I am ashamed of complaining about my petty middle-aged aches and pains. You will be in my prayers.

    • maryfran says:

      Please don’t be ashamed of your aches and pains! They are just as valid as my pain, and heck even I complain when I stub my tow or bang my elbow.

      And thank you for the prayers, they are much appreciated.

    • maryfran says:

      I am glad you like those 🙂 Spending a little time designing them is forcing me to spend time focused on positive words. It has been incredibly therapeutic for me, and I am glad they are bringing light to others as well!

  18. Sandy Morris says:

    Mary Fran: I am so sorry someone in your audience hurt you so bad! I too have unrelenting pain and can understand your frustration, exhaustion, and brain fog. People have no idea. I sometimes forget that because I study diet and health and disease that I don’t have the right to push my knowledge on other people. You are right to tell people your story and you are also right in telling them to mind their own business. I have a friend who is slowly slipping away from Lyme Disease. She has an incredibly intelligent husband who is always doing research on things to try and find new treatments for her and sometimes I suggest things I run across, but I have to try and stop myself from telling her to do something and leave it at making a suggestion. I hope that the person was saying the things she said out of compassion and wanting to help. Sometimes I just have to tell myself that those haters are a gift too. Fighting for our right to do things our own way helps us form a clear plan for how we want our lives to be. Blessings to you and keep on fighting!

  19. Eileen says:

    If you lived anywhere near me, I would bring you appropriately concocted and baked cupcakes. And would refill your scripts if you needed me to.

    Whatever works for you. And bbbbbbppplpth to everyone else.

    • maryfran says:

      Thank you! You have an incredibly lucky set of friends and family to have someone that generous in their midst!

  20. Natasha says:

    I totally hear you. I have nerve damage and some disc problems that unbeknownst to me were causing a bunch of other painful problems for me over the years. With the nerve relaxant I’m on now, I am making progress. Good luck to you, stay string and do whatever it takes to keep on baking those cupcakes.

  21. Kurt Cruse says:

    Don’t take this in the wrong light bc it is such a silly and sarcastic phrase. As I mean it only in the most serious of terms. It’s just how I have to respond, bc, you know, it’s me.

    Proudayouuuuuuuuuuuu (really).

    Stay strong. Fight the good fight. And when possible, enjoy the fucking ride.

    • maryfran says:

      Thank you Kurt! That means a lot to me – and I am glad that your comment sounds just like something you would say to me in real life 🙂

  22. Freda Eaton-Lea says:

    You just proved to me that there are wonderful people in this world. I am sending you a hug and I promise it won’t hurt. Keep doing what you are doing.

    • maryfran says:

      Thank you! There are so many wonderful people, and I am touched that you would consider me one of them.

      And the hugs from people like you mean the world to me 🙂

  23. Deanna says:

    You are a strong woman for coming out in the open with your condition and your choices and I applaud you!

    I used to have an “incurable” chronic pain condition. I won’t offer you any unsolicited advice. I will just offer you hope. Because today that condition that all the doctors told me could not be cured, could only be “managed” is 100% gone.

    It can happen.

    Hang in there.

    • maryfran says:

      Thank you Deanna!

      And I am holding onto hope that something like that happens for me! If not, I will keep fighting til the end.

  24. Make NO apologies, sister! You know what you need to do. Thank you for sharing your story! Sending you a virtual hug and prayers! Very happy to have met you at Nourished! No comic sans for me 🙂 haha 🙂
    Cindy

  25. Daymon says:

    Pain I know pain I see and my view is what works for you is right. Others may view but can not see nor do they know. I see more than my share- I admire you show more than your fair share. Got bless. I know people who want to die these people I know. So I die a bit more than my share. Stay in. I also may share my pain. But not today to you. Someday I may.

  26. Tea Lynn says:

    I too am an overcomer of a chronic, debilitating disease. The arrogance and ignorance of so-called concerned people confounds and irritates me.
    I applaud you for making a public stand on your right to privacy.
    However, my philosophy for dealing with unsolicited advice is, it none of their business. Moreover, by the time you have winded your way through an explanation of your illness and your choices in management of your condition, that annoying person will have moved on to their next target.
    Don’t waste your energy on negative people. Save it to live your joy.

    • maryfran says:

      I thought long and hard about writing this post. And while the critics were the catalyst to its actual publication, I know at some point I would have wanted this blog to be about my whole story and not just the pretty parts, or the parts that were easy for others to understand.

      I love the last sentence of your comment, would it be ok if I used it in my positivity project that I mentioned in the post?

  27. ginger says:

    wow, if you are this strong and driven at 28, imagine what a powerhouse of a woman you will be at 40! I can’t imagine suffering as you do and I truly hope you find relief, by whatever means.

  28. Sari says:

    My next batch of cupcakes will be in honor of you! You are one brave lady. Saying prayers for you–and wishing you days filled with hope and happiness!

  29. I love you so much darling; thank you for mentioning me in this beautiful post. Keep your head up; you are a superstar and I love ya!
    Thank you for writing this amazing post. You deserve the world!

    • maryfran says:

      Thank you Amie! Thanks for having the courage to go before me. And going back and re-reading those posts made me feel a bit more hopeful.

      xoxo

  30. Lizza says:

    I knew you had pain issues but I had no idea they were so severe. I hope the good days outweigh the bad for you always. And you already know I’m around whenever…did you also know I give pedicures & can be trusted not to touch certain things? Wow that sounded dirty haha but you know what I mean <3

    • maryfran says:

      That sounded very dirty.

      I love you Lizza, and I will come to you for a pedicure next time I can make it to Madison 🙂

      I have kept this in because I didn’t want to burden my friends or have them exclude me because they assumed I couldn’t do something.

      I will call you sometime soon 🙂

  31. Brie says:

    Beautiful post. Thank you for the reminder that some of us are so blessed and forget it now and then.

    I have chocolate gluten & dairy free cupcakes. Let me know where to bring them. 🙂

  32. Jennifer says:

    Wow~so transparent and moving. I deal with daily pain, but not to the extent you are. I am so sorry. It’s so hard when people can’t “see” your pain. Praying for relief for you and that the good days will outweigh the bad ones.
    Thank you for encouraging us through your pain.

  33. Miriam King says:

    This is my first time to visit your blog & I came here after Shauna (gluten free girl) shared your post on Facebook. I want to thank you for making yourself vulnerable & sharing this post. I suffer from M.E., fibromyalgia & chronic migraines. I’ve been unable to work for several years & spent a number of those housebound. Through that time I’ve had people, even some friends, judge my medical & lifestyle choices without fully understanding my illness or the hours of research and appointments that led to my decisions. I’m so sorry that you experienced this – I just wanted to applaud when I read: “If a friend of yours suffers from a chronic illness, do not offer them unsolicited advice. What they need is support. A shoulder, an ear. Not a lecture.”! 🙂 Thank you for spreading this word!

    I also love your Chronic Positivity project & I’m now following you on Flickr. I have considered using Super Better myself. I actually signed up for it a couple of months ago but haven’t figured out how I might best use it to benefit my situation yet so I can’t wait to read your post about it.

    Thanks again & I wish you the best possible outcome with your health!

  34. J says:

    You are so honest and strong! I wish nothing but better health. I believe you are on your way with your powerful post and support system you have set up for yourself.

  35. Lars says:

    Bravo, and enjoyed your post. I am a pain sufferer as well, severe narrowing of the discs L4 L5 S1. Sometimes it’s just too much to just take a shower, or even walk. I need medication daily to be able to work and support my family. It’s heartbreaking how people look down on people with real pain. Thanks for bringing this darkness into the light. Hugs and prayers to you.

  36. Melissa says:

    For years (over a decade) I tried to manage my chronic pain, depression and anxiety with diet, exercise and meditation. I thought worked, kinda. Until it didn’t. I sympathize totally with the difficulty that is the process of making the choice and accepting the choice that medication is sometimes the right route, and sometimes it’s the only route. For me it was a traumatic decision, one that caused me to spend a half hour crying in my doctors office making the choice and a half hour crying of the relief of having made the choice. For me medication works better… so much so that I’d never go back to no taking it. I still, like you, use a modified diet to help the meds along, but truely there is NO SHAME in medicating. There is NO SHAME in taking care of your self to the best of your ability. Stay strong (because you already are). Stay smart (because you already are). Stay brave (because you already are). And I hope that having share this, however unwillingly :), brings you peace. Because acceptance and sharing can bring the same kind of therapeutic relief that cupcakes do. And I agree I’m not giving up cupcakes either.

  37. Amanda says:

    You are quite an amazing woman, Mary Fran. I had no idea. If you need anything, please don’t hesitate to ask. You are such an inspiration and don’t worry chica, I will help you on your leggings mission!!

    • maryfran says:

      I am pretty good at keeping a secret 🙂

      And thanks for the help with the leggings, we need to keep that trend going!

  38. Deb says:

    Thank you so much for sharing. I have been suffering with CRPS/RSD since I got bit by a feral cat while working at the animal shelter in 2007. My life has not been the same since. I recently had to have my scs removed due to an infection, so I’ve also needed to “up” my meds. I’m continually looking for non-narcotic ways to ease my pain. I just felt the need to tell you, you’re not alone.

  39. Christine says:

    “If a friend of yours suffers from a chronic illness, do not offer them unsolicited advice. What they need is support. A shoulder, an ear. Not a lecture.”

    THIS.

    I cannot stress how much I agree with this.

  40. Aww…Frannycakes! I’m so sorry to read this! Even in spite of everything, you still sound so upbeat and optimistic…ROCK ON!

    I do know how you feel living with chronic conditions. While mine are not nearly severe as yours, I also fall into that prematurely geriatric feeling toting around my 90 million Rx bottles, have a medical team (western & holistic) to keep me alive, and then of course all of the random mystery illnesses that pop up every few years. I’m currently in one, so that’s why my bloggin’ has slowed down too, but seriously. Wine and cupcakes soon! We’ll toast to weird/rare diseases! 🙂

  41. Davina Stuart says:

    Wow.. that is really all i can say. I’m 39 and I was in a car accident about 5 years ago that I probably shouldn’t have been able to walk away from either. Messed up my spin, shoulder and hips, but I know I was lucky and blessed that I didn’t wind up with anything pinched or severed. Spent a year in massage and chiropractic treatment.. but the pain never really fully went away.. It wasn’t until the accident that I realized I’d been living with gradually increasing all over pain. After the accident, at first i wrote it all off to the trauma. I know now that I most likely should have had a Fibro diagnosis. There were days when I could barely function and now, looking back, I have no idea how I managed to go through it all.. never got it though, cuz i never complained to my doctors about it.. in fact, i didn’t really see doctors much til 2 years later when things went downhill further.. and then i had more important things to worry about then the pain (like not being able to breath, super high BP and severe anemia among others..) 2011 I finally figured out that gluten was a big problem. going GF did change my life in amazing ways, most of the pain has gone completely.. however, I still have the damage done to my lower back and hips from the accident, and there are still days when that pain alone slows me down and i’d really like to curl up in bed and not do anything, thank you very much.. and I have an 18 year old step daughter who thinks much the way your “critics’ do.. diet and exercise are all you need.. everything else is a cop out for the weak..
    So i can begin to understand a little tiny bit about your pain. And while yes, it would be great if diet and exercise could undo all the damage that gets done to us, sometimes it is simply not enough. I still take way more pills then I would like to each day, but they are the crutch my body needs right now. If I’m very lucky, one day i won’t need them (or at least not as many.. I’m already off the iron as i’m no longer anemic.. yay!) but for now, I do, and I will take full advantage,, just as I wouldn’t deny my mother her MS meds.. and we slowly work on changing my step daughter’s opinion.. to one that is a bit more open and accepting.. and hopefully it won’t take some major injury of her own to understand.
    (oh and I’m not fully grain or dairy free either.. ice cream, cheese and gelato are just too good… and my family would rebel if i took rice and corn away now too.. hubby’s and indiana boy… we do try to limit the dairy though, as my youngest step daughter was just told she’s lactose intolerant.. make the choices you are comfortable with when it comes to diet.. change what you can now, and, if need be, change more later, but i’m not cooking 3 different meals every time, so we compromise..)

  42. Chrissy says:

    I got the link to this blog from a page I like on Facebook and it’s so awesome to read it!!!

    I too follow a gluten free diet, I too have a chronic pain illness that nobody gets!! It’s so nice to know I’m not alone, ‘cos I seriously feel it sometimes! I’m 32 and how often do I get “have you tried this? have you tried that? why don’t you try this? if you did this it would help”!!! I’ve been dealing with this for 12 years – took me the first 5 to even get someone to take me seriously! I’m getting a spinal cord stimulator next year (I only just got private health care so have to wait 12 months as this is a “pre-existing”). Can you tell me how much of a difference it’s made? Did it feel weird having something in your back to start with? Can you sit/roll over in bed/lie down OK? I’ve been through all these questions with my Dr but of course he doesn’t have one, so would really appreciate hearing from someone who actually has one implanted!!

    I wish you all the best MaryFran 🙂

  43. Ligea says:

    Thank you for your honesty and irrepressible spirit. Every day IS a new beginning and you’ll be in my thoughts and prayers each one. My dearest friend told me, while in the last stages of metastasized cancer, there is never any reason not to smile. Enjoy what makes you happiest and set aside the words of those who would judge you. Live your life to the fullest and make no apologies for it. I wish the very best for you MaryFran.

  44. Kim says:

    Mary Fran, You are fierce! Your beautiful spirit is shining through in this post. How we feel (for good or ill) and how we handle it is such a personal decision. Thank you for being brave enough to share your personal journey with us. I think it will empower others to stay true to what they believe is best for them.

  45. jeaninne says:

    I read your post. I am sad reckless posts on internet caused pain. My mom suffers so much that we have avoided dialysis and she has been at 15% now 11% function since January. Her fistula for the dialysis never really matured so we have to now start a different way which means 2 other surgeries– but we start today and my mom is worried about pain- everything triggers pain that cannot be managed. But we are at a wall here. So this is a little bit of where I am coming from. I am concerned but I am out of choices and I pray for her.

    I am guilty of not always understanding (when she does not recover well after any surgery/does not want to do the therapy) she just cannot do it and I cannot possibly know. So I am very concerned about today.

    That being said– I find it reckless people assume food will solve it. YES I know it can in some cases. But in some cases no. Assuming to know someone else journey is an easy trap and a hurtful result because people end up minimizing what the other person is going through. Hang in there.

  46. Tonia says:

    I admire your courage & strength. I pray my teenaged daughter will find that strength within herself to not allow everyone elses opinions & cures get to her while we work with someone in respect to her chronic pain & fatigue. It’s crazy the way people think it is their right to push on you ” their way”. Every individual is different & obviously most people suffering don’t stop trying to find a balance & it should be left up to that person & their support team. I wish you all the very best!

  47. You are absolutely amazing. I read your post and cried… how I can relate to the allergies, to meds, pain, to people judging, etc… I have a few chronic illnesses. Few people can actually relate to intense mind-blowing pain until they’ve experienced it themselves. I admire your strength. You are such an encouragement to me. Sending you lots of gentle hugs from Alaska.
    xo
    Megan

  48. You have put everything I feel into very eloquent words. Thank you.

    Yes, my food choices have helped me. But it’s not everything. There was a point a few years ago where I thought I’d never teach again, never be able to take care of my children, and never live the full life I wanted.

    Together food and medicine is helping. I have made my choices.

    As someone who blogs about pain AND food it can be difficult. But you will not find me on the RA sites telling others to “do it my way.” We all need to do the best we can for ourselves given our situations.

    Thanks for the honesty.

  49. Dia says:

    This is such a good reminder on being sensitive to other’s choices – ultimately – it’s YOUR body, your life, your choice!
    As a massage therapist for almost 30 years, I have had lots of clients over the years who had chronic pain that someone hadn’t found a label for yet, so ‘didn’t exist’ in the minds of their doctors … I’d tell them that #1 – I BELIEVE YOU!! Only YOU know how it feels to be in your body, & often ask if they wished their doc (or friend or whoever) could go through just a few hours ‘in their moccasins’ & THEN tell them it didn’t hurt!! I’m betting now that a number of them have been diagnosed with fibromyalgia or some other form of chronic pain.
    & #2 – I’d do what I could to help them feel better, to be part of their treatment team, to try not to make them hurt worse (or if they did – it was brief & that ‘hurts good’ that isn’t quite painful!)
    & #3- it “IS all in your head! The PAIN receptors /interpreters are there, so whatever hurts in your body is sending your HEAD the message – IT HURTS! MAKE it STOP!

    And it was always exciting when these clients found SOMETHING that helped, whether it was massage or Reiki etc or something else!
    It’s challenging for me to remember that all the time, when I’m passionate about something that has helped me or others around me; but I try to step back & remember it’s not always about me, LOL!

    Blessings, & thanks for sharing your story – many people are benefiting from your grace & honesty!!

  50. Given says:

    Cupcakes! Yes!

    Yesterday at my family reunion I was eating a cookie. One of my relatives told me I wasn’t to be eating that.

    I wonder how other people respond in those situations. Do you go into a long discussion about how you choose what you eat? Do you just say ‘Really?’ Do you walk away? Or pick up a whole hadful of cookies? Or step on their toes and say excuse me?

  51. Oh, Mary Fran! This is an amazingly open and honest post. Thank you for opening up like you have. I cam empathize with your position wherein I have been criticized by several for the decision to take my son off his medication once it was linked to a positive glaucoma diagnosis.

    It turns out there are dozens of people who feel I should continue medical treatment for my son even when this very treatment was causing him to go blind. Quite literally. Instead we have opted for a diet-based treatment for his ADD and have found success doing so. Even without medication he finished his 6th grade year as an A and B student, better than any year before and without one single ounce of medication.

    That being said, I know not every ailment can be treated through diet. When I had back surgery after suffering two years from a severely herniated disk which caused nerve damage, drop foot, incontinence and more…I first consulted with a dear friend, a homeopathic Dr./chiropractor whom I had known since I was 12. After laying out my symptoms and checking me over, even he agreed that modern medicine was my only option. I was 27 when I was injured and for those two years before surgery I had to rely on wheel chairs, walkers and canes to get any distance.

    That is something I do not wish on any 27 year old. Ever.

    The only thing I can compare your pain to is the residual nerve damage I have resulting from that injury. I know my pain is nothing like your pain, but it is the closest I can come to empathizing.

    You are doing what you know is best, and you are a living example why we all must carry forth and do what WE know to be best.

    I am proud of you.

    xoxo,

    Sunny

    • maryfran says:

      Sunny-

      It makes me so happy to read that your son is doing better with a change in diet rather than medication! I have struggled with the pros and cons of prescription drugs for a while, and I would wish that on no mother or child. The more healing we can do with food and exercise the better – I whole heartedly believe that. And that diet has made such a difference is incredible. Frankly, I am jealous. I wish diet changes made more of a positive impact on my pain.

      Thank you for your empathy & support, I truly appreciate it!

      -mary fran

  52. As another person who deals with an undiagnosed illness and chronic pain (and the related crap), I applaud you for this post. On the other hand, I found it because one of the most judgmental food people I know, one who is happy to diagnose people on the street and has told me that eating HER diet would cure me, said this was oh so awesome. The hypocrisy may keep me laughing long enough to make the pain fade for a while…so that’s something, right?

    • maryfran says:

      Laughter, my dear, is the best medicine 🙂 (no matter what got us to the point of laughter!)

      And maybe, just maybe, this post got through to her on some level? We can hope!

  53. crps help says:

    Having CRPS is not something to be ashamed of. Accepting things for what they are and being happy with what you can do will make a difference in your life. With regards to your medication, it’s certainly sensible to continue with the treatment if it works for you. Go and do it and be strong!

  54. Amy Marie says:

    I have a deep dark secret as well…and you couldn’t be more right — CRPS SUCKS.

    A friend of mine ran across your site while looking for gluten free recipes — and sent me the link as soon as she realized the similarities our stories share. Let me tell you — it couldn’t have come on a better day…

    I would love to be able to say that the things that people say to you, the way the look at you as you walk funny or have your pant leg rolled up because you just can’t bear it touching you anymore, and the way that “friends” treat you after the diagnosis don’t hurt — but they do. And they suck almost as bad as the pain.

    For those who have never had chronic pain, but still feel the need to take a stand against treatments — I hope and pray that you NEVER feel 1/100th of the pain that RSD/CRPS can cause. If you were to, I’m sure that your opinion would change in a flash — but I wouldn’t wish this pain on my worst enemy… It’s *that* bad.

    With that being said, I’d like to personal thank you for standing up for yourself — and everyone else who stands with you on Team CRPS. Thank you! Your post made a difference — to me, and I’m sure others as well!

    Stay strong…don’t give up…

    Amy Marie

    • maryfran says:

      Amy-

      Thank you for your thoughtful comment!

      It is incredible feeling when you discover that you aren’t alone.

      And thank you to your friend for sending you my way!

      Hugs!
      Mary Fran

  55. Cassie says:

    I admire you for speaking out and publicly speaking up about being on narcotic pain meds. I also have RSD, mild in my left leg waist to toes, severe in the right leg waist to toes, with some cardiac complications popping up, and I use a combo approach, much like you, to treat it. I currently use Butrans patches, hydrocodone, huge doses of gabapentin, Savella, a compounded cream, meloxicam for the underlying arthritis, Lumbar sympathetic nerve blocks, and warm water PT to keep control of my pain. Even then I walk with forearm crutches and sometimes have to fall back on a wheelchair. (I also have autoimmune arthritis because my RSD went untreated for 6 years, fibro for the same reason, and a rare genetic skeletal disease that means my femur is as much metal as it is bone.) These things combine to allow me to work full time. And I’m hoping once I have a Spinal Cord stimulator implanted, which I’ll be doing the trial for in the next 2 months, I’m hopeful I’ll be able to go back to being a designer.

    Like you, I’m young. I’m 26 now and have used narcotics for almost all of the 9 years I’ve had RSD. I push hard to stay upright and mobile. And when people, including my family, get in my face about my medication decision, the temptation to scream gets pretty hard to ignore. I cook to keep from killing people. Same with knitting. Right now, I’ve been wearing myself out keeping up with my garden, but I’ll have excellent organic, locally grown, canned goods for the winter while I recover from the SCS implant. (Can I confess, though, to being terrified about the surgery? Which is rediculous- I let a man replace half my femur 2 years ago in a surgery so complex they needed an orthopedist who specialized in crushing victims. But that’s the truth of it anyways.)

    But I will say one thing- you aren’t the only one on a crusade to keep tights in fashion! They’re all I wear, aside from PJ pants, lol! My faves? I have a bunch of Hue brand leggings that look like boot cut jeans. Very comfy and very easy to wear with a tee. They’re a bit pricey at $40+ a pair, but I’ve had the one pair for 3 years.

  56. christy kennedy says:

    I am very, very sorry for your pain, which sounds horrendous. And I’m very sorry for the emotional pain that goes with everything you talk about. But I just have to tell you that after being in tremendous pain and misery from a nightmarish list of physical and mental ailments for decades, I (and my four children, my mother, and my brother) got 80% better on a gluten free diet. What really finally turned things around (some got worse on the typical GF diet) was avoiding all grains and dairy. That was the answer for us. And had I known earlier, we would have done a lot less suffering. Good luck to you.

  57. Jennifer says:

    I want to say thank you for this blog! You took ALL the words right out of my mouth, and brought me to tears reading this. I just turned 30 and have had RSD for 2 years now. Everything you said, I have said. I have begged and pleaded for someone to understand what its like. and I HATE how the doctors ask me ” Describe the pain” How do you describe something that you want give up on? Sometimes the pain is so bad I get frustrated and just cry because there is NOTHING I can do about it. I guess all I am saying is, and as much as it sucks, I am glad there is SOMEONE who understands! Thank you for this blog.

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