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    Community Voices


    Hi im in despriate need of advice. My dad was bipolar and commited suicide because of it. I have lost him and my step dad who tragically died of a stroke a year ago in which I found dead. I have struggled with severe anxiety ever since I can remember and extreme anger. I would yell scream hit. My anxiety would not let me function or sleep for hours. And I have struggled with anoerexia and bulimia. Everyday I wake up anxious and something always seems to tick me and I’m always yelling or crying. I cant seem to be able to get through the day without a melt down. It comes in periods throughout my life. For the past few months I have been extremely depressed and irritable where sometimes it turns into rage. I do not know what to do.Anxiety medicine does not seem to work and my brain is constantly turning and turning and it never seems to stop.

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    Community Voices


    Honestly can't believe I'm at this point, it's been a minute...

    A lot has happened, Husband has Alzheimers and it's moving forward as it will, Dr. thought I had a stroke and ended up in the hospital twice in 1 and 1/2 weeks for 3 days each. Over my head in paperwork for husband to receive VA benefits as he is a Vietnam Vet. I found out about 3 weeks ago that man I had loved for most of my life was killed in a car accident...That has sent me to the bottom. Have talked to 3 therapists, been told to think of something else when the memories surface, do mindfulness, etc. Problem is I don't want to forget, I don't want to "move on" and only hold on to the memories here and there, sometimes.


    Bi-polar robbed me of the good life I was supposed to have and then gave me 40 years of pain and trying to re-create the happiest days of my life, and yes, they truly were. Hindsight is 20/20 and I have been looking back at my life for the truth, as in Nothing is perfect and looking back in honesty you normally find that those memories weren't as great as you thought. I've worked on those for about a month now. They were the best days of my life and I walked away. We were literally thousands of mile apart, I was 20 years old. So very young and afraid to believe that someone, I found out later, would be the only man to ever love me for me. Wild and crazy, bipolar and all. Loved for me.

    So I sit here today begging GOD to please please take me home, through tears and screams I don't even recognize coming from my throat. I'm so very tired. I totally understand that HE died for me and that he knew before I was even thought of who I would be and everything about me. So why GOD, why am I here and why have I had to spend 60 years always going in the wrong direction and always in pain. This time has been a bit different. I actually started with a letter to my brother. It will be hard for him as he has always been up front with my bipolar and his problems understanding it. Not sure how to explain in writing to my husband why I'm not here anymore, as he doesn't understand a lot these days and I'm his only caregiver. Where will he go now and who will take care of my beloved dog if I'm not here.

    I literally fell on my knees this morning, the knees that I scraped up last week and are still bruised and sore, Begging for GOD to just take me home. I DON'T beg, maybe 2, 3 times in my life. I'm begging God now though. Can't write anymore as I can't see the keyboard and I'm so so very tired. If anyone reads this or actually gets through this loooonnng book I've written, I want to thank you for being here. This has so often been a comfort and support for me.

    #bi polarII #to tired

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    Community Voices

    What clothing brands are most comfortable for your chronic pain?

    <p>What clothing brands are most comfortable for your chronic pain?</p>
    17 people are talking about this
    Community Voices

    So much stuff!!!

    I have been having a really hard time and it’s been a reallly long year for my family.
    About me I have Fibro, RA, IC/BPS, sciatica AS, DDD, SpinalFusion spinalstenosis etc..

    I have my oldest brother who had a stroke this year. We have always spoken and never had and any issues ( unlike my other siblings that’s another post).

    When I was younger my brother more than once sexually assaulted me.
    I don’t know if it actually considered that
    I was sexually assaulted by my father when I was a child and raped at 15 by an older man.

    My brother who is 20 years older than me tried to kiss me on more than one occasion this was when I was in elementary school. He I found out a few years ago was also along with my brothers and my sister were sexually assaulted by my father as well.

    So the situation is idkw but after he had his stroke I just couldn’t speak to him.
    I did only speak to him because of my mother. I did tell my mother when I was younger and I can only say she made excuses for him and begged me not to not talk to him.

    I love my mother very much and we have a very good relationship except for this issue. So I haven’t spoken to him since his stroke and I feel extremely guilty for it.
    He has been trying to get in contact with me but I have thwarted contact.

    My husband knows and of course he says I should not feel guilty and doesn’t understand why I had been talking to him all these years.
    I don’t know if I should say something to my mom who is 85. I don’t think it would do anything but upset her or cause and arguement. Or bother saying anything to my brother. Which idkw I feel bad saying anything which doesn’t make sense.
    I know I should have gone to therapy years ago but does anyone have any suggestions how I should proceed in the interim ?

    #SexualAbuseSurvivors #SexualAssault #SexualAbuse #SexualAssaultSurvivors #ChildhoodSexualAbuse #SexualTrauma #SexualAssaultAwarenessMonth #RheumatoidArthritis #Fibromyalgia #Fibro #InterstitialCystitis #sciatica #DDD #AnkylosingSpondylitis #painfulbladdersyndrome #LymeDisease #ChronicIlless #ChronicLymeDisease #LymeWarrior #Spoonie #PituitaryTumors #PituitaryTumor #SpinalFusion #gastric sleeve surgery #Anxiety #CPTSD #PTSD #PTSD

    8 people are talking about this
    Community Voices

    What Fibro Pain Feels Like

    Last night, I was in deep pain. My chest contracts whenever I move in bed. My spine feels like breaking every time I stretch my torso and legs. My arms should remain a bit tilted to support my sides, or else, I feel like my rib cage will collapse in pain.

    I wished to die in my sleep.

    Doctors say that sleep is the best answer to address chronic pain. But to get there, it feels like an uphill battle – and a long fight with dragons on a cliff. I wish to fall into that cliff and so I could plunge into the ocean and float to inexistence.

    I wished to stop worrying if the lumps around my breast and the big ones on my armpits are nothing but another fibromyalgia muscle spasms and nodules. I wished they were not as bad as they felt like whenever I touched them. One light stroke to knead these lumps brought pain that radiated through my whole body.

    I am so tired of this ache.

    I miss having regular therapy – physical and cognitive behavioral therapeutic sessions, I mean. But that will cost a lot in a third world country where I am in. I don’t even have enough to cover food and bills in the next few weeks. There’s no discount on people with this kind of disability here. All standards, in private offices and as a citizen, I follow as it is expected from able bodied individuals. Paying the same kind of taxes or the same attendance policies meant there’s no way to keep myself afloat but to just go with the flow. And with the flow I go. I must say, life on earth is so hard. It is even harder for people who do their best to play fair.

    Probably, in my dream land, when I indulge in pleasuring myself, I would feel a momentary relief. So, I tried it, just like many lonely nights in the last decades. Even if I knew I was just fooling myself, I still did it. But at the back of my mind, I agree that no placebo can eclipse the deep pain I am in.

    The nights when I was first touched when I was a little child played on and on in my head. And there were times I would tell myself, maybe because I gave in 10 years after that time, I was doomed to live in agony. The push and pull of wanting to be pure while in an impure body have been torturous. And so probably, the build-up of guilt and shame on top of my longing for real parental love has caused my body to say, “I give up.”

    I cried and cried and repented of my sins. Maybe I deserve this. After all, I am a wretched woman just saved by grace.

    I would probably be better off when I stop breathing.

    I want to see my Creator. Maybe when we finally see each other, He will tell me why I have to endure such pain. But even He doesn’t, it will be okay. I just really want to rest with Him.

    P.S. I am not suicidal. I just used ‘death’ as a metaphor to describe the pain.

    #fibromyalgia #ChronicPain

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    Community Voices

    My Current Trauma: Estrangement of my Adult Child Exacerbated and Enabled by my Mother

    <p>My Current <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23cec300553f33fe99e90c" data-name="Trauma" title="Trauma" target="_blank">Trauma</a>: Estrangement of my Adult Child Exacerbated and Enabled by my Mother</p>
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    Lessons Learned From Grieving an Unexpected Diagnosis

    In the past year, I started experiencing lightheadedness, fatigue, headaches, shortness of breath, and “brain fog” — and the symptoms increased the longer I stood. Basically, I was experiencing everything some people would feel before fainting, but luckily, I’ve never hit the floor. There are days when someone speaks to me, my mind is cloudy, and I’m trying so hard to process what they are saying to me that it becomes exhausting. Two weeks ago, I had no idea what neurocardiogenic syncope was. I had no idea I was about to be told that three of my heart valves were mildly leaking and that I have a small hole near my atrium. It was honestly unexpected news. I’ve heard “Your lab work and scans were all normal” so much that I didn’t expect to hear anything other than that. It took me a week or two to actually process the news. I felt like I was passing through the five stages of grief over and over again. Denial: The scans I had a few years ago never showed this, so what if the doctor made a mistake? Sometimes I do have good days when my symptoms are minimal. Are my concerns even valid? Anger: Didn’t anyone catch this years ago on my last scan? Of course with my luck, this is happening to me. Bargaining: What if I had taken better care of myself? What if I had changed the way I eat and exercise? Would this still have happened to me? Depression: I have a lot of health anxiety regarding my heart, and it also manifests as depression symptoms. I am at a high risk for stroke, and I am terrified of the possibility of dying young. I’m also afraid  of having to face one of my worst fears — open heart surgery. Acceptance: So far, everything is mild and just needs to be monitored. My relationship with my body has changed, and there are things I have to do differently now, but that’s OK. One aspect of an invisible chronic illness is the compromise and sacrifice that often comes with living with the condition. You may be trying to navigate your life while simultaneously trying to figure out what type of life won’t make you feel too sick. It can be really frustrating — especially if you’re young. Changing your life plans can come with a lot of sadness and grief. When something in your life gets turned upside down at such a young age, you may start to view life differently. One good thing about me, though, is that I have the desire and willpower to persevere. I’ve had to accept that I have some limitations now, but that isn’t going to stop me from achieving anything I set my mind to. There are a few things I’ve had to learn how to do differently, and there also are a few things I have learned about life in general. 1. It’s OK to grieve for the life you had before your symptoms began. I don’t remember the last time I was able to walk around a store or through the mall without feeling like passing out or needing to stop to catch my breath. I went to IKEA with my boyfriend a week ago, and at one point I got so lightheaded that I had to stop. I was walking, which had come easily to me before my symptoms started. Sometimes I feel like because I am young, I am invincible. But that’s far from the truth, and I’m grieving it right now. 2. Don’t take the little things for granted. I will never take for granted how good a deep breath feels. Learning the power of breath saved me. When control of your body is taken away, breathing is something that can allow you to gain some control back. If all I can do is take a few big, deep breaths, that’s OK because that still means I’m alive. Being able to breathe during procedures or episodes is helpful to me. Whatever you are feeling in the moments when you find yourself needing to focus on your breathing will probably pass. I am grateful for the power of breathing. 3. It is OK to rest when you need it. If you are tired, that is OK. Your mind and body might be adjusting to your condition, and it may take a while to find your new baseline. Our bodies seem to be always changing, and that is OK too. Every day is different for most people. We live in a society that can promote a toxic productivity culture in which not taking breaks and working overtime is applauded. However, for me, taking regular breaks and sitting down has been crucial to preventing burnout and symptoms of syncope. If I haven’t taken a break for a while, my body will definitely let me know that I need to. Trust your body — it knows you best. When you have a chronic condition or have recently been diagnosed with one, lean into it. Learn everything you can about your condition. Learn from your body. What makes you feel good? What makes you feel sick? Start to intentionally seek out and recognize the good things in life and be grateful for them if you can. Use what you learn to help others — just as I want to do.

    Community Voices

    Pattern of falling out with strong 'alpha ' female friends

    I have a history of being extremely close friends with, I think three women, but something's telling me it's four?!
    The pattern is very similar, actually you could almost say identical in the way it plays out.
    I feel like I'm a bit of a silent assassin, for want of a better word, in these relationships. In so far as I never have any premeditated agenda in the friendship, apart from being a great, supportive, reliable, caring and honest mate.

    I have many faults, and I am the first person to admit them. Apart from the obvious mental health issues, I have absolutely no filter, and don't think before I speak. I literally have the memory of a goldfish, so I'm always accused of not listening, and I am quite an insular person and live in my head a lot. Recently it's becoming more and more apparent that I probably have undiagnosed ADHD.

    I used to worry so much about what people thought about me, how my behaviour affected them, and how I could appease everybody.

    The women in question were all extremely prominent in their field. One owned a local pub, the other owned a very successful nightclub, and the other, although not so successful at the time, has gone on to study and become a child psychologist, after having recovered from alcohol dependency using the 12 steps programme.

    I'll try and keep this quick because I could go on forever. Basically, the pattern looks like this.

    Make friends, suddenly I'm the best friend they've ever had. They tell me secrets that they have never told anyone, some of which are really personal or involve sexual abuse etc.

    I am regarded as someone who can be manipulated. As someone with a very high level of emotional intelligence, I note everything, but never make comments or say anything unless asked.

    The reason people see me as someone who can be easily manipulated (maybe weak in their opinion) is because I am very confident, and as someone fascinated by human behaviour, I err on the side of the viewer, rather than participant. If that makes sense?

    So many times these women have accused me of not being supportive enough. They have presented me with examples of what their friends have said or think about me, always negative. However, because I'm secure in myself, it never bothers me.

    The main element in every one of these friendships is that they believe that I am someone who can be manipulated and will comply at all costs. But at some point during the friendship, usually after about 5 or 6 years, the tables always turn. Never intentionally, I always think it's rather serendipitous, and the way the universe plans.

    I have just realised that it's definitely 4 women! Yay! Is that Yay for me losing these crazy bitches outta my life, or Yay because I actually remembered it was four women?!
    Either way works for me. Lol!

    So I'm hoping that you have some idea of what I'm trying to convey?

    The last woman was the one who has really gotten under my skin.
    She is extremely extrovert, an exhibitionist, self obsessed, hypocritical and passive aggressive. All of the traits that she detests in anyone else. (Projection perhaps 🤔)

    Anyway, after 5 months of the silent treatment, she 'accidentally ' pocket called me. Then continued to bombard me with accusations of having lied on 3 occasions, refused to meet up and discuss things like adults, and over the course of a week sent a few messages saying "well what have you got to say about everything", and when her messages fell upon deaf ears, "well you clearly don't care, and haven't missed having me in your life, so I think we're done, bye "

    None of which I responded to, probably the most frustrating thing for her. I wrote a few replies, to myself, to vent my anger and frustration. Because the whole situation had been completely manifested by her, without anything other than her crazy mind to compel her beliefs.

    Very quickly, because this is becoming far too long.

    She accused me of saying that I told her that her boyfriend called me a cunt. This was last December at a Christmas lunch, after 5 or 6 hours of serious drinking. She told me she had asked everyone present whether he had indeed called me a cunt, and they said no.
    I mean seriously, semantics, drink, what the fuck does it matter anyway in the scheme of things? I think calling it a lie is tenuous to say the least!

    Second alleged lie. I was with her and a friend. He had recently split up with his wife. She had made some comments initially, and apparently when I related them back to our friend, I didn't get the details correct. Please help me here. Because if you're sitting at a table and a friend has misquoted you, wouldn't you just say something like "no Jo, I didn't say that, I said this etc" I don't know if it's possible to lie when the person who accuses you of lying is sat next to you is it?

    I am happy alone, it makes me sad that these relationships seem to replicate, and play out in a similar way, but I have many friends from childhood, who I'm still in touch with and see at least once a year.

    I don't have any concerns about my behaviour or how I could have attributed to the situation, and I would be the first person to hold my hands up and admit it.
    I think that's one of the things that they can't deal with. That I am completely transparent, honest and truthful. That way you never get into trouble because you're always telling the truth, it doesn't change and no matter how hideous the truth is, you can't deny it.

    I have told my parents about my childhood abuse with my grandfather and brother. They went out of their minds, I was excommunicated from the family, thrown out of the house on Boxing day with nowhere to go.

    But when you know you are telling the truth, believe me there is nothing more empowering or self validating. When you watch everyone else trying to run away and hide from it, when you're friends make up ridiculous stories about you, which has taken them five months to do.

    I have survived triple negative breast cancer twice. I have nearly died, or maybe should have died, eight times. I'm here for a reason. And that reason is not to stroke the egos of women who are ultimately light years away from becoming as secure and insightful as I am.

    Please don't mistake my confidence for arrogance 🙏

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    Community Voices

    My meds….

    <p>My meds….</p>
    2 people are talking about this

    Coping With the Effects of Ehlers-Danlos Syndrome on the Whole Body

    Seeing a bird perched perilously upon a high wire seems reminiscent of living with chronic illness, which is a human health condition or disease that is persistent or otherwise long-lasting in its effects. I’ve thought about what life can be like for the chronic illness community. Some days, chronic illness can seem to take up the entirety of a room, and accomplishing anything outside of the difficulties of the illness may feel impossible. Other days, you may be able to hold chronic illness in your hand, place it in your pocket, and carry on as you try to create enough good memories to get you through to the next inevitable hard day. Ehlers-Danlos syndrome (EDS) is a rarely diagnosed condition that affects every system in the body. It mismanages the production of collagen, the protein “glue” of the body, and it weakens every part that is involved. Skin, joints, ligaments, and hollow organs are directly affected — which leaves the rest of the body with a cascade of struggles. There are 13 different types of EDS, and more are added as they are discovered. Some are more severe in their presentation than others, and they affect each patient differently. This makes it difficult to have a universal treatment plan for all of the symptoms that may occur. Currently, there is no cure for Ehlers-Danlos syndrome, so mediating a body’s response to the collagen defects incrementally is typically the best way to have the highest quality of life. Also, responding to each patient’s individual difficulties in their own way can help them feel validated and respond better to treatments that can truly help. One major hurdle many of us with EDS often have to deal with is not being heard and treated properly by our doctors. Generally, doctors are not trained to deal with conditions that can affect every part of the body. Medicine is usually more of a “reactive” profession — treating what is obvious and emergent — than a proactive trade in which symptoms are treated before they get out of hand. This system can be difficult to navigate as a chronically ill patient with multiple needs. We are sometimes pushed through appointments without having the time to dig to the root of each symptom completely. The areas in which we live, the insurance that we have (or don’t have), and the amount of money we are able to spend on treatments and out-of-pocket costs are big factors in the amount of care we are able to obtain. This process can leave us feeling lost, embittered, and alone when we are not able to stay on top of our chronic illnesses. It can also make us feel ecstatic, hopeful, and accepted when we are simply heard and a doctor is willing to try the treatment plans we have researched so diligently. There are often no easy answers for this, and no amount of being more assertive about what our needs are can necessarily help. It’s a delicate balance in a system that is not built for treating chronic illness. I’ve had multiple doctors placate me to not look for further diagnoses, stating that “One ‘zebra’ found is enough” or “We like to keep everything in one basket,” though doctors don’t often realize that with EDS, all diagnoses are the same “zebra” and in the same basket. The more identifiable traits that can be addressed and the more manageable our entire syndrome can be, the higher the quality of life and the greater longevity we’ll tend to have. Another major hurdle we often deal with is having bodies that have “minds of their own” and will often not cooperate when we want them to be active. Many types of EDS are multi-systemic conditions that have many comorbidities, which are other illnesses or conditions that are caused by Ehlers-Danlos syndrome. EDS is also a progressive illness, which means it can continually get more severe as we age. When we have flares that exacerbate the symptoms in one body system, it can have a ripple effect to other systems and be so overwhelming, painful, and untreatable that we cannot leave our homes. These ripples can last for days, months, or even years without proper treatments, guidelines, and cures. Living with EDS can be a never-ending cycle when there are so many factors that lead to delicate imbalances in such a difficult-to-manage system. We must often consider everything we consume, how we sleep or spend our time, where the bathrooms are at every location, whether we’ve been keeping up with a hygiene routine, how accessible the areas we wish to visit are, and the effects we may have to deal with after a social excursion of any kind. At this time last year, I was barely able to leave my home for appointments — and I couldn’t do much else. My health had gotten to the point of being bigger than I could handle, and I couldn’t stabilize it. For the sake of learning, growing, and teaching, I’ll share some details in this latest physical hurdle. 1. I feel exhausted to the point of often not being able to drive myself. Even walking the dogs in a zombie-like state was a chore I could hardly endure. Running an errand? Never. I do have blood sugar symptoms too, which contribute to exhaustion, but fortunately, there are current studies regarding EDS and diabetes. Many rare diseases are on the verge of breakthroughs of varying degrees all over the nation, but for now, I struggle with being tired. 2. Everything I eat goes through me. I can no longer determine which foods I was sensitive to even though I don’t have many foods I can eat. CT scans revealed stool retention even after a 24 hour cleanse, so I was “backed up.” Everything getting through is called “overflow,” which generally consists of collected water. I was incontinent because of this — sleeping on pads and towels, only leaving the house when necessary, and using pads, crossing my fingers, and hoping for the best. This is a rarely talked-about part of health decline and can keep a person at home all on its own. I knew the next steps could be dire, and I wasn’t looking forward to those possibilities. 3. My thyroid wasn’t always producing as much of its hormone as it should be. This is no surprise since I only have half of my thyroid. Just getting it within “healthy range” was not enough for me — I had to fight to get it down to a lower number based on symptom improvement. This took several months and appeals to the doctor, and it made a positive difference, but did not clear up all of my health struggles. I’m used to not having all health symptoms worked out, but the more symptoms resolved, the better. 4. My muscle fatigue and weakness has increased. This is probably because of all of my exacerbated symptoms. My legs are the weakest, but I do have generalized muscle weakness due to neurological issues resulting from hypermobile Ehlers-Danlos syndrome and tethered cord . The earlier EDS and its comorbidities are diagnosed and treated, the better. 5. I’m always in pain everywhere. I believe the increase in my pain is due to exacerbated symptoms and other conditions, like lipedema and Sjogren’s syndrome, that I’m still trying to get diagnosed. This is yet another reason why diagnoses and treatments are so important. 6. My skin and liver are struggling right now. I’ve always had skin that flares after a shower. Lotion helps, and treating mast cell symptoms does so even more, but splotchy, red, dotty, tiny, itchy patches everywhere? This is new. Also, we found a spot on my liver, and we have to keep an eye on it. I had one “good” organ left! Ha! 7. I visit many doctors. I even finally have a new internist, but they just seem to be a cog in the wheel of never-ending tests, procedures, and difficulties. I have recently received some help in much better ways than I have before, and now, I’m starting to catch up on treating a few of my chronic symptoms. I feel blessed that I still have some life left in me and am not completely relegated to my house at all times, but I still have to be vigilant about “overdoing it.” I sometimes feel like I have a cloud of worry hanging over my head as I wonder when my life-changing symptoms will surprise me next, even as I try to live my life to its fullest and stay grateful for what I have. When you see me smiling, it is genuine. My smile may mask my difficulties, but I’ve truly found happiness in focusing on the positives. Having a silly husband who naturally evokes laughter helps too. Here are some treatments that are currently helping and making a positive change for the better: 1. I get saline IV infusions. Navigating the medical system to receive this much-needed care was difficult, but the effort was worth it. I now access my own port weekly and administer my own fluids. I have dysautonomia (My autonomic nervous system does not regulate properly), I have hypovolemia (I have low amounts of bodily fluids), and I have a lot of neurological damage that keeps my gastrointestinal (GI) system from working correctly. This treatment has brought some of my body back to life. 2. I take supplements. Some of my supplements help me rebalance electrolytes, while others keep my joints and tracts in working order. Potassium, magnesium, salt, vitamin D3, B12, multivitamin, even cranberry and glucosamine chondroitin all play roles in helping all of my systems work as well as they can. 3. I wear braces. It’s best for me to stabilize my joints from the ground up. I have shoe orthotics to keep my arches in place and ankle, knee, and joint braces to keep everything as stable as possible — which helps lower my pain levels and increase my leg stamina. 4. I use adaptive devices. I use a wheeled walker for any distance outside of my home and a power wheelchair for longer distances that I can’t navigate on my own. My legs gradually lose power as they are used. This is common in EDS, but society can be difficult to navigate when your ability level isn’t constant. Most days I don’t notice reactions, other days I can’t help but notice. Hopefully, someday, tolerance and objectivity will rule. 5. I eat to meet my body’s needs. I don’t eat meat or gluten, and I watch my histamine intake too. With so many medical conditions constantly vying for my attention, I try to keep all of my systems as happy and compliant as I can. I cannot tolerate statins, and after my stroke, eliminating meat was the best solution for keeping the right cholesterol levels and a healthy heart rate and blood pressure. I keep my protein levels up with plant proteins. My body doesn’t respond well to gluten, so it’s not an option. Everything in my body works more easily when my GI system is engaged and functioning as best as it can. When the medical community and our physical bodies are determined to hinder our best efforts, I am thankful that the internet can provide some answers and relief. It helps me find other doctors in my area and locate insurance providers through the help of online support groups. The experiences and connections that others with chronic illness share can be so helpful in finding any small measure of positive reinforcement. A friend in one group stated that people with chronic illness often get so used to being in “survival mode” that we may tend to have a different quality of life baseline than most other people have. That sure hit home. We also may “mask” well to try to fit in, but masking our symptoms can be invisible to others and may twist our perceptions of ourselves. If you’ve been surprised by anything I’ve mentioned thus far and wonder why you don’t know these things are happening, keep in mind that “survival mode” is a place in life that may make it difficult to reach out or talk about what we may be going through. Chronic illness survival calls for extra grace, mercy, and leniency in not taking cancellations or long pauses personally. In fact, reaching out can help us have support systems that can help us move forward. It can also feel daunting to breach the chasm that forms while we’re busily trying to keep our bodies going or are figuring out how to navigate our conditions in public. Consider that some of us with chronic illness may feel like a “burden,” which can take a lot of work to overcome. In fact, it took me two weeks to write this article. It is daunting to put myself out there and be vulnerable about such life-altering symptoms, but hopefully, the help it can potentially bring others will be worth it. Trying to receive the basic care needed to enhance wellbeing with chronic illness can feel like a two-step shuffle. The possibilities of something going “wrong” can seem endless, but I urge and encourage anyone struggling with lack of proper care and diagnoses to strive to move forward regardless of the hurdles. While it can feel lonely and daunting along the path of living with chronic illness, you are not alone. Together, just like a herd of zebras, we are a dazzle, and the more we all learn from our conditions independently, the more we can share and look forward to as a group. We can be a flock of birds on a wire, perched perilously but proudly.