Hypermobility = Unstable Joints = Two Black Eyes

Wow, I sure feel like an idiot. Also I’m miserable, so whatever lesson I was supposed to learn, I think I got it now, universe! Seriously, you can stop!

2015-01-27 04.17.32

Until last night around midnight, I had not slept for 68 hours. At all. I don’t usually end up forfeiting more than one night at a time to Chronic Pain, but this time she went ahead and took two full nights from me, and then some. Bitch. Anyway, I was hurting from trying to have one of those as-enthusiastic-as-before-I-got-sick nights of fun with my boyfriend, but ended up accidentally injuring myself absolutely everywhere while we were at it. Waking up a couple hours later on Sunday, I realized there was no way I was going to be able to get out of bed at all unless I got up right then and there, so at 5 am on Sunday, Chronic Pain began her longest winning streak against my sleep since the car accident.

I don’t remember everything from this entire time period, and you can kinda see why in the picture!

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I know I laid down to go to sleep both nights, but that both nights, nothing happened, so rather than stress and get frustrated in bed, I got up and paced around the house, smoked a cigarette, drank a glass of water, wrote in the hard copy journal I sometimes keep, did light stretching, self massage with the DaVinci tool and the back buddy, and ten minutes of breathing. Still awake. Okay. Rinse. Repeat. Rinse. Repeat. Damn it, sun is shining, guess I am up for the day. Same thing the next night, only I was in even more pain and way more loopy, and my limbs were shaking and sore and muscles all over felt torn and limp.

I was wall-walking, which is how I navigate my house when my balance and motor skills start to go, or when my vision is not what it should be. Unfortunately I had just moved a bunch of furniture earlier in the week to create more open space in the living room for my business partner and I to actually get some work done and set up the play pen for her little boy. Instead of guiding myself to the couch with familiar furniture, I ended up with one leg collapsing out from under me just as I took a step, then realized I didn’t have anything to grab onto. So my nose grabbed onto the side of a table or just the floor, I’m not quite sure, and I blacked out for a second (actually have no idea how long I was out…), came to on the hardwood floor in my living room, close to the couch, but not close enough, and realized that my hand which was cradling my throbbing nose was full of hot liquid. Shit. Shitshitshit. “Chris! Hey… honey, can you help me?” I remember calling loud enough to wake him up as I made my way towards the bathroom. The bleeding took kind of a while to stop, and for obvious reasons after knocking myself out like that, I couldn’t go to sleep that night either. Yesterday crawled, I kept nodding off until my cortisol levels caught up with the day again around one or two pm. Coffee couldn’t help me, but I kept trying. I was so excited to sleep last night, finally, that pain be damned, I had already done an hour of relaxation including meditation, visualization, gentle yoga, and working on my breathing, so I was out cold in under 5 minutes after crawling beneath my pile of blankets. I woke up at 5 am to my right leg screaming painfully at me because all the blood had for some reason stopped moving around in it, and it was throbbing and immobile, and hurt like I always forget is even possible, all my toes twisted and curled up in unnatural positions. I had to stretch the toes out by hand after I dragged my dead leg over the side of the bed and mostly succeeded in not screaming when it hit the floor. Excruciating is the only word for trying to get blood pumping in a limb again once it has pooled there. So even last night, though I slept, I was up and down again.

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And that’s what my black eyes and nose looked like when I woke up this morning, so I won’t be leaving the house for a bit unless it’s an emergency. Haha, embarrassing!

If this cycle is going to keep repeating as it has been for the last year or so, I am going to need some kind of pain relief, obviously, to make it possible to sleep during flare ups at the very least, so I can break the cycle. Being able to sleep is the only way to begin to crawl my way out of a severe long-term flare up. Haven’t I shown that I’m willing to try anything and everything, haven’t I given it all a real try? What works best should be available to me, but it is not. This whole demonization of opiates has hurt so many innocent bystanders, and it has hit the chronic pain community so hard that many of my friends who were on pain contracts and have been dropped recently have reverted back to unhealthy coping mechanisms and self-medication. After years of success working with their doctors they are being treated like junkies, and I think being treated like that actually produces more addicts than anything. Anyway, tangent over, back on subject: I usually (since the car accident anyway) cannot sleep at least four nights a month because of pain, and I have accepted and adjusted to that. Unfortunately it’s been more like six or seven nights just in January so far, and that is starting to increase my pain even more. This is one giant vicious cycle that I want out of so badly. I don’t sleep or nap during the day, it’s part of the mystery with my case, and it confuses my doctors a lot, but to me it’s just my personality. I also can’t “catch up” on sleep from one night to the next because sleeping extra hours equals severe pain that I have learned the hard way to avoid by setting an 8 am alarm, just in case I manage to sleep in that late. My schedule is as consistent as my pain allows and I thought I was improving, but this latest increase in pain and accompanying strange ramping up of other symptoms has left me concluding that was just hopeful optimism.

This week in particular the meds that are supposed to make me fall asleep and stay asleep are making me feel wired and wide awake, and the meds that are supposed to help me focus and get through the day are making me want to curl up in a ball somewhere dark and sleep it off. That makes it hard to want to take anything at all, the only thing that keeps me on my regular maintenance doses of everything and keeps me slowly decreasing the Lyrica is knowing how awful the withdrawal effects are on top of an already painful day (previous experiences where I thought I had taken my pills, only to figure out the next day, in extreme pain, that I had actually missed one or two doses, or accidentally falling asleep with nothing on board, or thinking that I was magically cured for a day and not taking my meds. Oh, how I have learned).

Lately my whole-body pain has increased, as have my migraines, and though I have met this change by continuing my small exercise regiment and getting up at the same time, eating healthier and limiting my caffeine and sugar intakes, it has just continued to roar brighter and higher, an ever-increasing, agonizing bonfire blazing across my brain.

I have found that beyond a doubt, not a one of my current meds helps with breakthrough pain or flare ups. and I have to wonder how I am supposed to be increasing my activity levels and taking on more and more responsibilities while I am just getting worse and there is absolutely zero relief from the resulting negative impact on my health. Being in so much pain that I can’t even catch an hour or two of sleep is just unacceptable. I’m not headed for better health by pushing myself like this, I’m headed for new scary/weird symptoms, extra agony, and perhaps even total physical collapse.

I have been saturating myself in a mixture of all of my topical treatments combined into one super-pain-gel, with extra crushed up arnica tablets, drops of essential oils, high CBD/CBG hemp oil, castor oil, and everything under the sun that is considered a pain-killer or anti-inflammatory. I whip this concoction up often when I am in more pain that usual, but this time it is not working as previously, so I called up my compounding pharmacy to find out how much ketamine they can cram into one of these creams for me. Turns out, three times more than is in there right now! I am so relieved, that might actually help me! They also add something called LDNs to topical treatments, and if anyone has any experience with LDN’s either topically or orally, for chronic fatigue or fibro, please, please, PLEASE leave me a comment with your take on it! I am fascinated.

My boyfriend actually found the article about them as relating to fibro pain, so thanks to him at least I have something new to try that doesn’t necessarily have to be ingested (my kidneys need a break!). I am really encouraged that he researched my situation enough to find that potential solution! On the other hand, there is still no verbal reassurance from him, no open communication, no emotional honesty from him, and no two way conversations. Just…. Trying not to be so upset about how I think he feels towards me and focus more on how I feel towards myself. In the end, in order to be in a true relationship I must have the strength within me to keep trying to thrive, all on my own. My strength doesn’t come from him. Even if it would be so nice to have his verbal support, not having it won’t kill me. So progress has been made on my side in the relationship, and some progress and gestures have been made on his part. I have been kind of cool and reserved towards him, and that’s because in between my own bouts of emotional honesty, I have noticed how there is never a reply from him, never any comfort besides physical, and unfortunately I can’t always tolerate back rubs, hugs, and tilting my neck or moving my jaw for kisses. Plus, with all my abandonment issues and PTSD, I have to be careful to disengage from my most co-dependent behaviors, such as changing my emotions to suit his mood. The goal is to do this without hurting his feelings, but it’s rough. It’s hard to explain to him why our relationship is less healthy than is ideal, and it’s hard to keep pushing for what is better for both of us. I got us into this mess by dragging so much baggage, trauma and emotional damage from my childhood unknowingly into our relationship. He did not choose to be in the role that he is in now in our relationship. I just keep talking and hoping some of what I say is making it through and hitting its mark, because I have no way of knowing for sure. Sometimes my own fears cause me to act out, and that seems to be the case here. The reality is that he does many small sweet things, he tries, he wants me to be happier, he wants us to keep working towards a better tomorrow. Even if he doesn’t know how to communicate it at all, and he doesn’t know how to say the words I need to hear from him, he loves me. There is so much room within that love that together I know we can shape our relationship into one that is truly honest, content, respectful and forgiving. We will get there, that goal is a lofty one even for a couple not dealing with Chronic Pain. On this issue, Pain can kiss my ass, that jealous creature is not taking any more people out of my life than she already has.

Right now I am at a cross roads with my life in so many ways. I find out in the next three days, hopefully, if I am qualified to stay on my mother’s health insurance. Super Stress! If not, I lose everything concerned with my health which I have so delicately balanced in my life right now; all my access to medications, doctors that I need to continue seeing, the teaching hospital, my psychiatrist and mental health care in general, and to top it all off, Fibromyalgia is not a covered condition under the state-run health insurance. Great. Fucking great. So there’s the cause of much of my anxiety lately. As usual I procrastinated, and as usual I didn’t have most of the information I needed when it would have been ideal to have it, but unlike usual, I didn’t let my ADHD and brain fog stop me from getting everything in on time, early even, and following up with them. I have sticky notes, alarms on my phone, tasks on ToDoist, etc, anywhere I can slap reminders to stay on top of this stressful issue. The idea of losing access to any quality healthcare is terrifying beyond words, I do not even feel capable of contemplating how that will go if I am denied.

Most days it is a major struggle to get anything done at all, and even though I have only been able to shower once every four or five days, I just keep doing the one or two tasks a day that I am capable of, and that has so far in the last month added up to a rudimentary business plan, a super organized list of links to wholesalers, ingredients, prices, as well as display and packaging ideas, and recipes for many of the products we will be attempting to make. Only the best and most useful will actually end up on our first line at the end of spring. So again, progress is happening, but it feels unfairly limited because of how little I can do at one time. The old me would have products done by now and ready to be packaged, she would have designed the logo, created a website, written ten blog posts and scheduled them out in advance, and started working on the final draft of the business plan. Unfortunately I am not the old me, and my current level of ability will just have to suffice. I know i can make it work, I just need to stay consistent. Having this driving focus on an overall goal for the future is helping me stay sane during this gnarly week of flare up, but it’s also making me a little crazy. If that makes sense.

I am aware that I cannot continue pushing this hard indefinitely, and yet I’m not ready to decrease activity. I have finally found a few passions left in my life, like painting, writing, helping friends during difficult times so I can be around when they are thriving again, advocacy, staying educated about clean eating and chronic disease research, designing, and starting our small business. I finally looked Chronic Pain in the eyes and told her off by doing things that are incredibly painful, and which take weeks to recover fully from, and enjoying them, instead of worrying about the inevitable fiery backlash from fibro and chronic fatigue and hypermobility. So even though the pain is seriously awful, I’m not finding myself ready to stop.

Maybe I’m just crazy. Maybe I’m being unrealistic and stubborn. Maybe this is false bravado. No matter the reason, I have tasks piling up that need tackling, and this business is no longer just an idea, it is happening, and so I have to keep pressing forward, pushing through the brain fog, this newest stupid injury, and the severe fatigue and pain, all in order to keep seeing the incredibly slow, but present, progress towards a higher goal.

I am slightly dismayed that throughout my life I have always wanted better and been willing to work on myself, but somehow measurable progress has still been so incredibly slow as to seem non-existent or even backwards at times. Even getting close to figuring out what is going on underneath the obvious is a long up-and-down journey that I am still on.

My one truth, and a major consolation lately, is that I have never passively allowed myself to suffer, even when I whine like it. I am always seeking some kind of alternative to my present situation, and I have nearly always achieved those goals. Often the changes were not positive like I intended, but instead were more closely recognizable as manifestations of the trauma sustained throughout my childhood. Basically, my reactions to the perceived ever-present dangers and perceived constant rejection from those around me are what have been reinforcing unhealthy coping, despite my best efforts. Knowing that puts some of the power back in my hands.

I am not a small child anymore. I can handle almost anything that is thrown at me. I am not helpless. I am not unlovable, my emotions are not disgusting, and I do not have to accept unfair criticism from anyone.

Phew, I guess I had a lot to get off my chest after not really blogging for so long. Sorry for the length of this mess of a post! Thank you for reading if you made it this far!!! ❤

Even with two black eyes and a very swollen and throbbing nose, I refuse to quit. Bring it on, Pain. Let’s see what I can get done today, despite your ugly presence. Keep trying to stop me. I’m not scared of you. Eventually I will be able to put you in your place, but until then, let’s be very clear about something: I own my body, and you, Chronic Pain, are just along for the ride.

Having this blog and meeting so many strong and wonderful individuals who are not defined by their illnesses has changed me in ways I would not trade for anything.

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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

9 responses to “Hypermobility = Unstable Joints = Two Black Eyes”

  1. Mark Aldrich says :

    Wow. What a week you’ve had/are having. I love this: “There is so much room within that love that together I know we can shape our relationship into one that is truly honest, content, respectful and forgiving. We will get there.” You are there. Thank you for writing this.

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Aww, thank you! I don’t give up, I guess. He and I have been through more than can be put on paper, even if I had unlimited time. Trying to separate myself as an individual after six years of accidentally codependent behavior, and during a time when I actually do rely on him as a caretaker, is adding yet another layer to this complex relationship. We have all the time we need to figure it out, though. Even if I’m not getting a response yet, I know I have to keep trying to keep the lines of communication open and respectful. When I can’t handle that I just try not to talk. We have successfully dealt with more in our six years together than most couples do in a lifetime of marriage, so I know how raw, how real, and how wonderful it is to be in love with your best friend. I wouldn’t want anyone else by my side and I certainly hope he feels the same way! ❤

      Liked by 1 person

  2. abodyofhope says :

    You are beating yourself up- like in the face!!! Your poor nose 😦
    Painsomnia is awful. And I don’t have Hypermobility, but I do have HyperPOTS that comes with crazy adrenaline rushes that last for days… You sound like you tried to do so much through your haze and climbing the walls- fatigue. Isn’t it madness how we can have both simultaneously?

    “…Throughout my life I have always wanted better and been willing to work on myself.” << You have so much drive to improve. And no, like you said, it's so difficult that the starting point is constantly changing. But many just stop pressing forward- and you don't. I don't either. And it's incredibly frustrating to put that work in and the starting points always shifting…often backward.

    Thank you for your advocacy, for speaking out about pain medication, and the challenges you face personally to help shed light on issues people don't understand. I do feel I'm ;earning more about how serious Fibro can be.

    LDN, from discussing it with my doctor in depth, he said I could not take it unless I was off all of my pain medications, LDN is a common MS medication and can be successful in chronic neurological pain, but one must come off other meds FIRST and be past ALL withdrawal effects BEFORE they would start the LDN. I have never heard of it used in a topical, however. My doctor may administer LDN differently from other doctors, of course.

    Be careful with you! (((pain free hugs)))

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Thank you for sharing your knowledge about LDN, I am not taking any opiates besides tramadol, and a quick search showed that was safe to take at the same time, but I bet the Lyrica would be a problem, and I am miles from being done getting off of that. Half way there though, and that doesn’t even seem possible a couple months ago!!!
      I love that you said you feel like you’re learning about fibro, because I have learned so much about POTS and RSD from you, I’m honored to swap info. I need to update/add both of those sections to my chronic pain resources page, and then find some good resources for new patients to use to navigate having either condition. If you can think of any groups/support networks, awareness campaigns, advocacy groups and education outreach aggregates that helps/helped you find yourself throughout the storm that is chronic illness, I would be so grateful to put them up to share with anyone who happens to stumble across my Resources page in a time of need. Lately a lot of my hits have come from search engines, and they have been things like “I have chronic pain and I feel a failure to thrive, how do I get out?” and “Chronic pain makes me feel suicidal.” and “Loneliness and chronic pain.” All heartbreaking, all people I want to find and wrap up in my arms and find some way to console or comfort. I can’t see a lot of the search terms and that makes me anxious, like maybe I’m missing an important one. But they pretty much all make me cry. I would like to cater to those people as much as possible though, they’re the ones who need to know there is life after illness. Sometimes I forget when I’m in the depths of a flare. Actually, every time I’m in the depths of a flare, so I always hope those people are all okay, that they found someone to talk to that comforted better than shouting into the google/bing/etc search box. Anyways, I got way off topic there, and I really just wanted to thank you for all the work you do for people that you don’t get to see face to face. You are awesome! *gentle hugs back* ❤

      Liked by 1 person

      • abodyofhope says :

        Jess, thank you for sharing that with me. You are certainly helping so many people who are struggling and need a life boat- you are that for them. We never know what parts of our lives are being used for good. Your life, even the the parts you feel are the ugliest to bear, are the things that others are finding hope in. Seeing that they are not alone through your life could be what keeps someone going for who knows how long. Your life IS being used.
        I know we don’t share the same belief system, but something that has really helped me in this whole mess is this verse: “In my weakness I am strong.”
        That weakness is the very thing that is the MOST useful in helping others. It isn’t our success in life or how fabulous we are that will help other people, but the things that crush us… If we have the courage to wear them on our sleeve, then they will be the thing that gives OTHERS strength.

        You are inspiring me to get more in touch with my stats. I really don’t know how to get that information. And one thing I’d REALLY like to learn how to do is to add resources to my page like you have, but I have searched and asked on forums how to, and apparently my theme is a little different??

        Speaking of off-topic, the past couple weeks, I’ve been very sick (as i see you have been in a tough place as well, sweetie 😦 ). And in that time I’ve thought about how much more I want to write that isn’t “inspiring” or “positive” and more about my own personal story. Not exactly what I had intended for my blog when starting it.
        This might be the end of my readership, but it goes back to “clearing out the cobwebs” that we talked about before.
        I respect your opinion so much. With a name like abodyofHOPE, will this throw people off when they come here for a specific thing?
        Maybe I should revise my mission statement?

        I thought of you a lot the last couple weeks. I really did. When I have someone on my heart so much, I pray for them.
        My husband was coming off of Lyrica as it became too expensive for him to warrant paying for it, and every time he told me of the effects from it, I thought of you immediately trying to get off yours. I’ve had other friends also tell me how tough it is to get off of 😦 I’m sorry you are going through that.
        I’ve missed you the last couple weeks, but you haven’t left my thoughts.
        Thank you for this encouraging message today. I’m having a lot of doubts all around, so this touches me deeply today ❤
        How are you feeling today? I hope you are having a better day, or have some better moments you are able to enjoy.
        Sending my love (((Soft hugs)))

        Liked by 1 person

        • Jessi Finds Out Fibro says :

          Mary, I absolutely love that you are listening to what is in your heart that needs to be gotten out and put some place where your rawest wounds will teach others how they are not alone. I don’t think that defeats your name at all, because I know that although your life has been extremely difficult and painful, your journey is what will inspire even more people to aim for happiness and acceptance of what is. Your journey is too powerful not to share! I want you to get a chance to share that. I want you to feel surrounded by love and empathy when you do.
          When we first talked, I remember saying with this cocky attitude that writing about your TRUTH even if that truth is not pleasant, it is not negativity. It simply is not. Honesty is what is needed. You have done a wonderful job of balancing both the joy you find in art, friendships and your relationship with your husband, but if the act and burden of staying so balanced in your writing does not feel genuine right now, you owe it to yourself to let it go.
          You do not need to fear your readership going away. Yes, people want hope, but just like you said above, they can find it in places that are both dark and unexpected. In that darkness, hope shines even brighter. Just write, babe. People need to hear what your soul is saying. Never doubt that what you want to write about is the right subject. ❤
          I wish I could make these weeks that have been so hard on both of us disappear, but that wouldn't help, would it? Because like it or not, we always learn something during the worst days and the lowest depths of our capacity for self-doubt. Even if it's not clear to us until after we hit publish, or until someone reaches out in response, writing about it hard and clear and true, it can and will bring your thoughts together in a clearer, more meaningful way for both you and your readership.
          I have missed you too sweetheart. I find myself mentioning you constantly, wondering if I were closer to you if I could help, wondering if you're doing okay in every sense of the word except how healthy people mean it.
          You are very much my muse, and although as you said, we have very different belief structures, I do absolutely admire you for your faith and for being one of the first people to show me what it means to be a good Christian through action, and not just a bible thumping one (this is a bigger deal than I can even get into here, but you healed some deep, deep wounds, by being open about your spirituality and melting the parts of me that couldn't forgive organized religion for my traumatic childhood), for your loyalty and friendship, for the beautiful things you do for others despite how much pain and effort it takes, for loving so fiercely, for your own unique beauty and femininity, and I would go on (and on), but the point is that no one who cares about you will stop reading. In fact, the posts that you have published before will be a basis for so many to understand that the dark side of illness is not being exaggerated or embellished, it simply is. You are the perfect person to write the hard things down, because often the rest of us whine so much that we are not taken seriously even when there's a lot more to it than just whining. You do not whine, in fact you downplay the hardness of it sometimes to keep the tone light. so your words carry a level of reliability to your readers that many of us do not compare to at all. I'm sure you are capable of complaining when it's completely warranted, but it's not the personality you present here, and because of that, your credibility while describing how you got here in such a deeply personal way will be much higher than if other bloggers were to attempt it.
          As for Lyrica, it is one major hurdle I need to finish getting through, but I'm giving myself up to eight months total to fully come off of it, knowing that I was on the maximum dosage less than two months ago and I'm now down to 1/4 – 1/3 of that is making six more months to detox seem super doable, even though I'm in some kind of personal Pain-Land hell right now and every day is new symptoms, new pains, new systems in my body freaking out. I can't wait to be off a regular dose for good and only having to take it on the worst of the worst flare days after that. I need every last drop of my memory, and forfeiting my ability to figure out what happened five minutes earlier to a drug that doesn't even help me that much but which I am clearly physically dependent on, well, there just isn't room in the future I want to create.
          When I went on it a couple years ago, they didn't even know how it worked in the brain, CNS depressant was their best guess. Now they do know and I have wanted to get off it ever since that study came out. I consider doctors who push it to be lying, thieving, blood sucking little leaches with zero potential of helping me or any other pain patient, because once you're on it, they've got you right where they want you, and that drug is $900+ a month without insurance coverage, even still my insurance denies it all the time so it became just one more thing to be anxious about. It's a good benchmark question when I meet a new doctor.
          Wow, I love to ramble at you when my life allows me to. Today, honestly (especially since I just extolled the wonders of honesty), I am unable to move much because of severe abdominal and kidney pain. I have woken up crying/puking four times in the last seven days, I have missed four nights of sleep in the last ten days, and I have been fighting with Chris and sad over his lack of warmth or response to me and his tendency to say really hurtful things (this week it was "well, maybe you should just leave, then." which got really out of hand and is still wiping me out and making me feel distant and numb when I try to think of him in a romantic way.), BUT *drumrollllll* I did manage to hold onto my current insurance plan through my mom's work! Huge relief!!!
          I love you dear and relish that you have found an opportunity to follow your heart instead of your head. It's not just your credibility that will make you a success at this, I just wanted to point out something maybe you hadn't thought of yet from your perspective. You will also bring that talented mind to focus on including so many people who are lost and wondering and feel isolated by many of the blogs that demoralize people for not being as "good as them" at dealing with their disease. You have a gentler approach, and a warmth that draws others in closer no matter what you are doing. If people are lost and need to simply connect with others in their situation, I cannot think of anyone better to welcome them, make them feel at ease and unjudged, as you did for me. The world really needs more of that. I got off topic, I really did, but I feel passionately that you are the right person on every level to undertake this challenge. And it need not be permanent. You are evolving constantly, as is your comfort level and self-love, and this blog is a beautiful reflection of that commitment to yourself as well. Anything you choose to write about, I love you dearly girl, and hope that it cleanses your soul to unload some of the burden to aBodyofHope, however you so choose to do so.

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          • abodyofhope says :

            Jess, you have given me so much to think about…. in a good way. I want to thank you for taking the time and energy to consider my writing at any length, let alone putting so much thought into it. I’m truly humbled by that. You humble me ❤ ❤ I've felt so full of doubts in everything lately- though I understand that it has to do with illness… I know we both deal with that issue of illness making us question what we are doing. That's another reason I so value you and your opinion. I often can't see myself clearly and I feel we might be able to see each more clearly at times. We have this special connection already. How is that? 😉
            Everything you said was so meaningful to me, and I think I will take the rightful amount of time to process it all. I know that if I had not met you, this would be a completely different experience, the writing wouldn't be something that inspires me like it has on this journey, if not for you, I may not even be doing this any more. Your writing has always excited me and inspired me. The way you are determined to grow inside of your struggles makes me want to grow more inside of my own. I feel you are my muse also! 🙂 I guess we AMUSE each other, huh?

            I do think that everything I have published thus far has been from my heart. Truly. Now though, there are some things I'm more ready to face and you have made me feel like I can give myself permission to share them. This isn't going to be an easy evolution, but I'm thankful for your help and advice on this.
            Isn't it funny how courage was my battle cry for 2015 and now I'm finding myself timid, and it's only Feb?! Ha!
            I guess I didn't know what the courage was supposed to be for going in, did I?

            Thank you for sharing with me about your insurance! I haven't forgotten about it, in fact I wanted to ask earlier. Just wasn't sure if I should ask here or wait and ask on facebook. What wonderful news Jess!!! Doing a happy dance in my bed to celebrate 😀 😀 Woop Woop! What a load off, right? Awesome news to start off your year.

            I just HATE that you are in so much more pain and have been so ill. I had no idea Lyrica could be so detrimental to one's health. You have been through so much the past couple years with your health, and also in life in general- so many changes. I'm sorry you don't feel the support you need at home to walk through this fire you are facing. Chronic pain and chronic illness are already isolating enough. I wish there were some sort of manual to know how to manage relationships with disability. But even then, each partnership is so individual and evolves at a unique pace.

            How is your bruise on your face? Is your cut healing?

            Jess, I'm so sorry your beautiful heart has experienced so much trauma at all. But knowing any of it was at the hands of "Christians" you have known throughout your life makes me want to apologize on behalf of strangers I've never met for hurting you. Faith should never be about hurting people, even though it so often does in "organized religion." My heart is heavy thinking about how that has effected you, but it's also a caution to what I want to try to avoid.

            I feel like this is all a new journey of discovery in a way, so I have many mistakes to make. Just trying to write my personal truth as I go. You and other writer/bloggers are awesome examples. I thank you from the bottom of my aching heart for helping me better find my voice. You are giving me and so many others courage to face the really treacherous monsters we hide away in our closets.
            ***You are a treasure.***
            So grateful for you.
            I need to rest my head and eyes.
            I hope you are getting good sleep tonight.
            Sending a gentle embrace ❤ ❤ ❤

            Liked by 1 person

  3. Brain Storm says :

    So many gems here. I especially appreciate the “I am not unlovable” and the not being afraid of pain sentiments…

    And sorry you’re having a rough time! That looks painful (Would be a perfect time to participate in the #spoonieselfie challenge though if you’re into it http://migrainebrainstorm.com/2015/01/17/the-spoonieselfie-challenge-2/). Would love to show people how “invisible illness” can actually result in some not-so-invisible mishaps.

    Anna

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      That is such a great idea, thank you so much hon! I would love to participate, I’ve got some pictures from when it got even darker, and if some awareness comes out of this injury, I will be totally satisfied and consider it worth the extra pain! It honestly wasn’t too bad, but the concussion is still in effect, and causing some issues! Still can’t touch my nose, but again, not that bad all things considered! I think fear makes the pain so much worse, so I’m just letting it happen now and see how that goes. It’s unpleasant, but I’m learning so much about my limits, triggers, and needs. All of us Chronic Pain Warriors deserve some respect! Thank you so much for your warm words and for the challenge, I just love the idea of doing something useful with this messed up face! 😀 That really does make it a lot better, on several levels!

      Liked by 1 person

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