Retinitis Pigmentosa

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    Community Voices

    Dealing with the Emotions of a Disability Diagnosis

    <p>Dealing with the Emotions of a Disability Diagnosis</p>
    3 people are talking about this
    Community Voices

    How Blindness Led Me to My Life’s Work

    When I was 18 years old, I started to lose by vision. As an athlete, the signs, at first, were small – missed passes from my teammates on the basketball court. Losing a fly ball in the air at my baseball games. Not following my golf ball’s trajectory on the course. I went to see a doctor thinking that it was something perhaps with my brain and was shocked to eventually learn I had Retinitis pigmentosa (RP) – a rare, degenerative eye disease that makes cells in the eye breakdown over time – eventually causing vision loss. I have one of the most severe cases of RP that one can have – and by age 30 I was completely blind.

    For years, as I worked through a range of emotions, I always knew one thing - I was determined to not let RP define who I am or what success I find in my life. Up until the point of my diagnosis, I had planned on being a doctor – and while that course was, and remains, unavailable, higher education and career fulfillment is absolutely not. Through a lot of tenacity, problem-solving, failure and entrepreneurship, two years ago I found myself starting a new job at NSITE just outside Washington, DC. Here, I have found my deepest purpose – helping blind and low vision individuals find jobs, while also helping companies and products make their tools more accessible to everyone. In my spare time – I’m entering my fourth year as a goalie for the U.S. National Blind Hockey Team because being blind has never dimmed my love of sports!

    The journey to this role and this life was not a straight line. I hope as part of this community I can share a bit about my path in the hopes it shows other blind and low vision individuals how they can find fulfilling personal and professional lives, even in the wake of the unexpected.

    I’m always happy to talk to anyone who has lost vision at any stage of life, to help them understand what steps they can take to come to terms with their diagnosis, and when ready, start to think about what is next.

    I look forward to learning more from you all, too.

    #Blindness #RP #Blind

    1 person is talking about this
    Community Voices

    How My Online Rare Disease Support Group Failed to Listen and Support

    Back when I was diagnosed with a rare genetic disease, Facebook didn’t exist. For better or worse, I didn’t have the digital community millions of people now turn to daily to converse about the countless number of medical conditions that exist. I was first able to get a Facebook account when I was headed to college, and can recall finding a social network there for my illness around that same time. This community, like most support groups, was started by someone looking for a place to talk with peers and alleviate the common isolation that comes with having a rare disease. Today, it is made up of over 15,000 people from all around the world — people with the condition and many family members, too. I did not spend much time in this community since I chose to disconnect from my illness in the initial years following my diagnosis. My family members were the only people who knew its severity. I didn’t even want to acknowledge its incurable, degenerative nature myself. It’s fair to say I knew nobody else with this disease and that caused me to feel alone, but also allowed me to effectively disassociate from it. On the occasion when the reality of my diagnosis would hit me, I’d shyly enter into the group. However, I always found it made me feel worse, rather than better. I would burst into tears after reading a post from someone not much older than me whose condition was progressing fast. People compared notes about who had it worse. Others wanted to know about how much time was left for them or their child. While I was largely suppressing my pain, this type of conversation exacerbated it. I made a decision not to check that group for a long time. I actually left it altogether. Not as an act of ignoring my condition — in fact, I deliberately spent those years becoming more aware and accepting of my disease — but in an effort to avoid the venting I noticed taking place in it. A few months ago, I decided to rejoin. After years of addressing and healing the emotional wounds surrounding my illness, I figured I could handle it. I was curious if the conversations were the same — more so, if my perception of them had changed. I wondered if my new outlook on life with an incurable disease would allow me to see the support group dialogue differently. My suspicion was confirmed when I started to get notifications about group posts. First, I noticed my perspective had changed; I was able to read difficult posts without crying or feeling my stomach turn upside down. Second, I noticed that the group talk was mostly unchanged. I saw many posts that prompted a flurry of comparative comments — things like, “How quickly did you lose your ability?” Or, “At what age did you stop driving?” Sometimes I would read them and move on with my day. Other times, I’d chime in a gentle reminder not to compare; this disease affects everyone differently, and contrasting your story with others will only snowball your pre-existing stress. A couple of weeks ago, a post from the group popped into my newsfeed. Someone was upset. They felt attacked and judged by others in the community. Stating that they’d come there to express a certain challenge, they now wished they never had because others had responded with vicious negativity and accusations. I’d witnessed a few others who wrote they were leaving the group altogether because of similar pessimism. I decided to post my observation and made sure to do so without accusation. I noted this was not the first time someone had posted this kind of feedback in the community; that someone who was there for support felt group members had provided the very opposite. Shortly after I chimed in, a few people responded. They said that they had felt the same and thanked me. It wasn’t long until the group moderator responded, too. What happened, however, was not what I expected. They told me I was wrong. They demanded the group was supportive. Without any discussion, they immediately deleted all responses other than their own and disabled further commenting on my post. They ignored feedback that could have served as constructive. Most importantly, they failed to provide others and myself support on a matter of concern. Here’s the thing: I strongly believe in support groups. I believe in their power. So much, in fact, that I facilitate one myself. Support communities address systemic issues that plague collectives and could not otherwise be resolved individually. They provide an environment to safely lean into a challenge and work on it together. Part of what makes the most effective support groups successful is their ability to move through distress, rather than deny or dismiss it. Defining the mission of a support group is critical. Weighing one’s condition against others contradicts the nature of community care as it individualizes a problem. Peer facilitation is, therefore, a cornerstone of effective interpersonal support. Having someone designated to redirect conversation when it becomes destructive is essential. Discussion is going to lean toward darkness when its subject matter is inherently difficult. When a peer can guide others back toward light, it serves as not only support, but also resilience training. If a facilitator cannot hear the concerns of their members, they have lost their ability to properly offer support. When it comes to something as profound as a life-altering disease or disability, we must learn to listen. Conversation must turn from venting to valuing emotional well-being. We should strive to be comrades rather than commiseration buddies. Even when someone is angry or upset, we must learn to see these as signs of sadness or anxiety and offer a virtual hand. Otherwise, our support groups will inevitably fail to be supportive at all.

    Katherine Eby

    Parenting a Child With Bardet-Biedl Syndrome: Vision Loss

    One dark night about six years ago, when my daughter Naomi was 9, I remarked that the Big Dipper was really bright. Naomi had squinted and blinked up at the darkness, wrinkled up her nose a little, shook her head and said, “I can’t see it.” I remember standing behind her and pointing it out while she insisted that she had no idea what I was pointing at. We were both really confused then. Naomi hadn’t had trouble making out the Big Dipper just a few months before. A few weeks later, my whole family left my in-laws’ house on a dark night, and we all remarked at the clarity and beauty of the stars. Naomi stood again squinting at the sky for a few moments before she finally realized what was happening. Wiping tears from her eyes she said, “I just can’t see them anymore. It’s been like that for a few months now. I just can’t see them at all.” Within a few months Naomi was diagnosed with Bardet-Biedl syndrome, which includes a condition called retinitis pigmentosa. In other words, her retinas were dying, and she was slowly losing her vision. Subtle changes in night vision are often the first signs of this disorder. Over the last six years, Naomi’s vision has slowly declined. Two years ago we planned a family vacation to a secluded cabin in the mountains of Colorado. I had hoped that at a higher elevation, out in the country Naomi would be able to see some stars again. But even at 3:00 a.m. after the moon set, in a relatively dark valley, at a high elevation Naomi had only been able to make out a few stars. It was a small victory that felt more like a major disappointment to both of us at the time. But something amazing and totally unexpected happened on our vacation to far northern Wisconsin this summer. Late one night, my youngest son was pestering me to let him go out into the driveway of our rented lake house and shoot off some glowing rocket helicopters. I finally gave in, but when I opened the front door I found the most profound darkness I have ever seen outside. We were on two square miles of private, dense north woods, and there was not a single light visible outside. The moon was not even up. With the first few steps, as my eyes adjusted, it was thick, black, locked-in-the-basement-and-can’t-find-the-light-switch kind of darkness. But after we cautiously found our way off the porch and into the driveway, I realized we had accidentally stumbled into something amazing—the most spectacular view of the stars I had ever seen. I rushed inside and swept Naomi out the door. She was a little skeptical as I guided her out into the darkness. Naomi squinted and strained at first, then she halfheartedly pointed out the brightest “star” Jupiter. “OK, I can see that one,” she said. But a few seconds later she could see a few more. After about three minutes she started to get excited. She said she definitely saw more stars than ever here. I led her farther down the driveway, away from any light sneaking out the windows of the house, and turned her towards the brightest Big Dipper I had ever seen. Standing behind her I took her right arm and pointed her finger toward each star in the Big Dipper. She saw it! Every single star in it. I fought a lump in my throat, remembering that night six years ago when we first realized she couldn’t see it anymore. I turned her toward Cassiopeia and pointed at those stars. She squinted and strained and then said, “Oh yeah. There it is. One, two, three…four…that one is really dim, but I see it, … and five. I see them all!” The rest of the family came out then, all exclaiming at the beauty. My brother helped point out the Little Dipper to Naomi, which was significantly dimmer than the others, but she managed to see that one too. Long after the other family members went back inside Naomi stood under those stars, straining her neck up at the sky, wiping a few happy tears out of her eyes. I finally brought out a wicker loveseat for us, sweatshirts, and some bug spray. We sat together for a long time then, and I just listened to Naomi. The longer she sat out there the more she saw. Her eyes continued to adjust and take in more. She said it was an interesting way for her to test which spots in her retina were still functioning well because stars would appear and disappear as she shifted her gaze around. She figured out that she could see the most stars out of a few spots in the peripheral vision in her left eye. She couldn’t focus on them perfectly or they would disappear. I told her that’s because the rods in the retina are responsible for both peripheral and night vision. She apparently still has a few spots of relatively healthy rods in her left eye and that is what she was using to see the stars, even though the cones (responsible for central and focused vision) in that eye are pretty bad. By the end of our hour and a half outside, she could see the Milky Way, some airplanes, a few satellites, and what she guessed was about 500 stars. She pointed out some of the dimmest stars she could see, and if she could see those, I’m sure she could see at least 500 others. It was intensely dark, quiet and beautiful there, sitting beside each other in the wicker loveseat in the middle of the gravel driveway, surrounded by the tall dark pines, with just an occasional call from the frogs in the lake to break the silence, and a sky above us that was finally, finally full of stars, even for Naomi. It was hard to come inside again, both of us knowing that Naomi will likely never see stars like that again in this life. I didn’t even mention going inside, just sat beside her and waited. Finally, just before midnight, she said, “OK, I think I’m ready to go in now.” It felt profound. No one took the stars from Naomi last night. She saw her fill, and then she chose to leave them. She left when she was good and ready. It was closure. The chance to say goodbye that she never had before. For so many losses in life, that is what makes all the difference.

    Community Voices

    Life is struggle

    The moments I remember are always filled with frustration, anxiety and #Depression. But it’s the time that I can still see the world. What am I going to do when I turn into #Blindness at last? Guess nothing needed to be focused specially anymore because all days will be filled with the same thing- sadness.

    I really want to figure out a reasonable explanation about why god chooses me to suffer this. If I were talented, fine, then I would be the “selected” one who would be destined to go through difficulties first and at last make difference. However, I am just an ordinary, average-looking person, and only unusual in terms of the really fragile and emotional personality. I cannot imagine how to face the outcome with full consciousness. I cannot imagine how I can find another reliable partner except for my parents. I also cannot think out a way living independently by myself anymore, although independence is the most important quality which I truly admire.

    I had been living without knowing my #RetinitisPigmentosa for 20 years. After then, I am struggled to deal with it. Sometimes I have a feeling that I am strong enough to overcome every challenge in the dark, while other time I am too terrified and desperate to do anything. I know it’s common for everyone, and I should accept the repetition.

    There is no sadder thing to compare myself to others, and after being aware of that, I tried to keep my mind under surveillance and control. However, still, I am jealous of people who have healthy eyes now and then. Maybe it’s a warning to remind me of valuing the current life? Cause I am always the person who lives by plans and hopes. It gives me endless motivation, as well as #Anxiety. Be as it may, If I am healthy, I would rather choose motivation and anxiety. Well, guess now I have to choose current life or I don’t need to make decisions anymore.

    You know what, I was once proud of my philosophy thinking way. Now, I am not going to read any articles about someone’s life stories and reflection. It leads to sadness, weakness and emptiness. It is not applied to the real and secular life at all. Instead, I prefer to read some practical psychological articles. And the best chance of me for now is to become a psychologist in counselling field. It can be seen that I am still paradoxical: for one thing I want to escape from life when I cannot see things anymore. for another thing, I still want to find a solution for the unseen future. I really hope that the day will never come, or come after I am 80 years old. Is it too long and a little bit greedy? Then maybe 50 I guess? Or, at least after getting my phd and obtaining a decent position?

    Life is struggle. What is in your mind?

    Community Voices

    What it feels like to be facing darkness and having anxiety.

    This is ME.

    Me on the left, is what you can see.

    Me on the right, is what I can see.

    I am legally blind. And #HardOfHearing.

    #UsherSyndrome. A combination of #RetinitisPigmentosa (RP) and #HearingLoss. RP is defined as gradual loss of vision leading to #Blindness. My peripheral vision is closing in and I have night blindness. I wear hearing aids, but, my hearing hasn’t gotten worse, so that’s a good thing, right?!

    This is me. And who I am.

    It does not define me.

    it’s. just. me.

    Just the other day, someone was shocked that I didn’t drive. He didn’t know the reason behind it, and when I told him, it was almost as if he felt bad. That’s one thing I don’t want. People feeling bad for me. There are others who are dealing with issues on different levels, in the ways they know how…

    I explained my condition, kind of laughing it off because I’m used to the reaction when people look at me and tell me that they would have never guessed I was blind. What do blind people really look like, really? As for me, I don’t like making it obvious. I guess I try not to let it define me, because the fact is, I am still who I am. Whether I can see or not. Whether I can hear or not.

    Trust me, I would love to drive; but, my license was taken away from me about five years ago. At the time my license was taken away, a friend of mine told me that this place could fix my eyes. I guess I was hopeful and wanted to believe it. Boy, was I wrong! A couple of weeks after my appointment (which I knew went to sh*ts), I felt like my whole world was crashing down. It felt like I lost my independence. You know how it feels to be told in a letter that your license will be taken away because of vision loss?

    I was sobbing as I held the letter in my hands, wondering what in hell I was going to do. I couldn’t breathe, as the tears just kept on coming. My girls were worried about me, wondering what was wrong. I tried to keep calm for them, yet at the same time, I felt so lost and so overwhelmed in that moment. A single mom of three, how was I going to manage?

    I couldn’t get to work from where I lived and would have to depend on someone to take me. Thank God my brother was around to help me out. My parents were more than supportive, and my sister texted me every day to make sure I was okay. But, I felt like I was a burden. How could I continue to live this way?

    I felt like I needed to make some kind of change – I had to make things easier. So, within a couple of months, I was transferred to a different location, enabling me to take the train to work every day. Up at 4:30 am. Getting the kids ready. Walking to the babysitter to drop them off. Off to the train station, and work for 8am so I could be back in time at night to pick up the girls. Dinner. Some girlie time. Bath. And bed.

    The 45 minute walk to and from the train station made me do a lot of thinking. Even though my landlord helped out a lot when he could, the stress was building up and it was showing. The stairs and steps were all memorized. I sat in the same seat on the train, every day. I walked the same path, every day. All so that I wouldn’t trip. All so that I wouldn’t bump into people, to avoid the dirty looks and rude comments. But honestly, how would they have known I had vision loss?! It wasn’t their fault!

    But, after about a year of trying. After having stitches under my eye because I bumped into a printer I didn’t see the paper tray thing sticking out. After having to buy new glasses because I busted mine into a drawer while trying to get to another drawer. After getting hit by a car because I just didn’t SEE the damn car! The bumps. The bruises. I couldn’t do it anymore. I just couldn’t.

    Call it a nervous breakdown, but I was done. My #Anxiety was out of control. The tunnel was getting more narrow, and I was hitting rock bottom. My mom rushed to come be with me because she must have known. She must have felt my fear and unwillingness to get myself out of the house. Trust me, moms know everything, even from afar!!

    I ended up having to leave my job. I thought I could try my marriage again, for the girls; however, that didn’t work. But, I decided that a life in the country with my parents, until I got back on my own two feet, would be best. And where I’m at now, confirms the decisions I’ve made.

    What happened, happened (and for the reasons it did), because everything happens for a reason.

    Just because I’m blind, doesn’t mean I am restricted. Sure, there’s things I can no longer do, and sure my anxiety keeps me from doing some things I enjoyed doing. But it doesn’t mean I can’t be a mom or a wife, or anything I want to be. I just have to do my best.

    My friends understand when I turn them away because most times, I would rather just stay home and not talk to anyone, and just focus on what I need to do for the day. And even online grocery shopping has been a blessing because I don’t have to deal with all the people and try looking for things on the shelves anymore!

    But, I have my family. I have Mimi (my canine vision dog). I have my cane in case I need it. And. I am fortunate to still have some vision left. The last minute trips I take and things I want to do, is because I want to cherish and experience the time that I still CAN see and enjoy with my children and family, and close friends. Make memories with the people I love. Money is just money, and life is just too damn short.

    Sure, I get frustrated when I bump my head against a cupboard, or a door is left open I didn’t see and I wham right into it.

    Sure, I need to slow down a bit and focus on what I’m doing.

    Sure, I see things from my heart that maybe others don’t understand.

    And sure, I may have issues. But the worst thing ANYONE can say to me, is that I have issues.

    I know I do!! We all do in some way!!

    If you truly know me, then you already know I deal with the ongoing changes in my vision loss, my anxiety, my bouts of #Depression, the care-taking of my children, and just every day stresses. It’s called life. And if you really do know me, then you know I deal with the thoughts in my head on a daily basis that just multiply every time I think about all the little things.

    Yes, I may have issues, but I have my reasons.

    Yes, I may have issues, but that doesn’t make me any less then anybody else.

    I want to live my life as much as I can with the people I love. I want to see as much as I can with the people I love.

    As I hold my daughters’ face in the palm of my hands as I kiss each of them good night, I wish I could see them. But I can’t.

    All I can do is feel their presence, hold them tightly, kiss them, hug them, love them. As much as I can. I have to accept the changes that come every day.

    Sure, I cry from time to time, but it is OK, right? We all do, and I’m sure there are times when maybe you’ve felt overwhelmed and wondered what the hell to do. But. It WILL pass. You CAN keep pushing forward!

    Me, I am so, so lucky for my support – my husband, my parents, my children, my siblings, my friends…I am so thankful for all that my husband does. He puts up with me!! I am thankful that he and the kids have learned my weaknesses and remember to, for example, leave things where they are, and don’t move from point A to point B within seconds, or I will be talking to a wall!!

    There is light at the end of the tunnel.

    There is love and hope, and I know it may get more frustrating as time goes on, but, I HAVE to. And I will.

    Someone once told me to smarten up…that I am a lioness.

    I have to believe this, not only for my sake, but for the people I love as well.

    Be the lioness, or the lion! Be powerful within, and live life.

    Be thankful for the beauty around you and just remember, there is a rainbow after the storm!!

    Community Voices

    Looking Healthy: How My Invisible Illnesses have gone unseen

    As a child, I was never the sick one. I was the one who exaggerated any and all injuries to my parents. A sprained ankle or wrist was never cause for concern. I would get hurt easily. I couldn’t see well but not even doctors believed me.

    My joints have been hypermobile all my life and I thought it was so cool. I used to show off my “double jointed” elbows and twist my arms 360 degrees as a child to show off how well my joints moved. People either thought it was cool or were grossed out. The reactions were fun nonetheless.

    As I got older, injuries happened more frequently. My knees got bad, my wrists got worse, and my ankles caused constant problems. Dislocations, subluxations, sprains, but almost never breaks. If it wasn’t broken, I didn’t need a hospital. My joints always popped back into place.

    As a junior in high school, my best friend had PCOS and a cyst ruptured her ovary. She went into emergency surgery for it. A few weeks later, pelvic pain started that just kept getting worse. After telling her about the pain, she told me it was the same as what she felt each month and to go to my mother. The first hospital trip, they overlooked ovarian cysts. When the pain didn’t get better, we went back. They had found a benign cyst on my uterus the first time, but a new test had confirmed I had ovarian cysts. The first scan had seen them but they were overlooked. I started birth control to stop cysts from forming.

    When I was a senior in high school, I took a sports medicine class for my physical education credit because the doctor decided I physically could not handle gym class. In this class, I discovered #EhlersDanlosSyndrome during a musculoskeletal disease project. I covered hypermobility type, type 3, for my presentation. I demonstrated every diagnosing criteria on the test. I was asked if I had it and I said I didn’t know. It turned out, my father has it, and I do too. I missed school because of doctors, but, because my teacher was the reason I found out, all of my teachers understood.

    Ehlers-Danlos Syndrome is a connective tissue disease. Each type has its own properties. Hypermobility type, the one I was diagnosed with, presents with hypermobile and lax joints, elastic skin that feels velvety, and some vascular problems. No one realizes how horrible it is to live with this condition. Vascular type, the type the doctors think I may have, causes a lot of vascular problems amongst all organs in the body. Many die by the age of 27 from aortic dissection. A geneticist refused to test me because I had not gone through an aortic dissection yet, even though all of my heart problems point to it.

    I was diagnosed with premature ventricular contractions, low blood pressure, #SinusTachycardia that happens everyday, and one leaking valve. One valve later became three. I was told I may never be able to have kids because my uterus could rupture. My doctor has been fighting for years for me to be tested for vascular type, type 4.

    The day before my senior prom, I was diagnosed as legally blind. At 14 I discovered I needed bifocals. Senior year of marching band, I realized I couldn’t see on the sides of my vision. Diagnosis didn’t come for years after, and I was diagnosed with #RetinitisPigmentosa. RP is a rod cone dystrophy that starts with the peripheral vision deteriorating. Some just get to that point. The second step is #ColorBlindness. The last step is being completely blind. I am currently going colorblind.

    At 21, I went through a #Miscarriage. Three days later, I stopped walking. I could feel below my waist, but could move nothing. It started as one leg being hard to move. After a half an hour, I couldn’t move my lower body at all. I was rushed into the hospital for testing. While I discovered I have #Scoliosis, spondylosis, and four bad disks, nothing else came back. I was diagnosed with conversion disorder.

    Conversion disorder is common in people who have been abused. After or during a stressful time or event, the mind shuts down part of the body to cause it to slow down and relax. Some go temporarily blind. Some become mute. Some become deaf. I become paralyzed.

    While pregnant with my miracle son, I discovered that I had gone #Undiagnosed with acid reflux all of my life. Water had always caused heartburn. When told to drink more water at a prenatal care appointment, I explained that water caused heartburn. When they found out it wasn’t the pregnancy, I was put on two acid reflux medications. Nexium is my next option, but I cannot afford it and we are fighting with my insurance for them to cover it to this day.

    I was diagnosed with Grave’s disease almost a year after discovering that my thyroid is hyperactive. I weigh too little for someone who is 5’7”, and have been accused of being anorexic due to my size. I’ve been told to eat a sandwich on many occasions. Someone even told me that I just need to see a dietician, after I was told my enlarged thyroid could be cancerous. I found out it wasn’t #Cancer, but I was still treated horribly.

    On top of those, I have #Depression, #Anxiety, PTSD, #Asthma, a polyp in my gall bladder, chronic myoclonic #Epilepsy, #Arthritis, carpal tunnel, TMJ, an astigmatism, a tilted uterus, tendinitis, high functioning autism, chronic migraines, and many #FoodAllergies, one of which is deadly.

    I have been called a hypochondriac. I have been told I have Münchausen syndrome. I’ve been told I’m faking everything for attention. I’ve had doctors look at me and tell me they won’t do tests because I have not had rare complications associated with certain conditions. When I can barely move, I am treated like I’m faking. If I used a handicapped device such as an electric cart, I get dirty looks.

    I want people to realize that just because I look healthy, that doesn’t mean I am. My son is 17 months old and doesn’t yet understand that his mommy won’t be able to do things like play soccer and chase him around the yard. I dread the day when my son realizes how sick I am, even if I don’t look it.

    Please be mindful of that seemingly healthy person with a handicap placard, or that young person in the motorized shopping cart. They may be sicker than you know.

    Community Voices

    Youtubers with chronicillnesses and disabilities

    Youtubers with chronic illnesses or disabilities

    Polar Warriors | #BipolarDisorder

    ResetwithTerry | Graves Disease

    FranklyFranca | Graves Disease

    Emma Tara |

    Shaina Leis | Maladaptive Daydreaming

    Leah Dawn | ME, IBS, Emeraphobia & #Depression

    Crafting For Almost Everyone.

    Dodie – Depersonalisation Disorder

    Cara – Cerebal Palsy

    Sarah rose – #Fibromyalgia

    Life Of A Blind Girl – Retinopathy

    Fashioneyesta – #SeptoopticDysplasia

    Zoe’s Clan -EDS & co

    Serhat Eronal – #SpinalCordInjury

    Jessica Chelsey | #Lupus

    WheeledNomad | EDS & co

    Wheels2walking | Injured Paraplegic

    Able Family | Injured Paraplegic

    Jordan Bone| Injured Paraplegic

    Juliannado | Special Needs & Crohns

    Alma Guerrero | #SpinaBifida

    Fae System | Antisocial PersonalityDisoder & Bipolar

    BriaAndChrissy | OCD & PTSD

    Anna Campbell | Bipolar

    The Labryinth System | #DissociativeIdentityDisorder

    Crystal | Gastroparesis

    Liddy Alvarez | Fibromyalgia

    Kay Bre | Fibromyalgia

    The Life Of Me Smile Magee | Cancer, #Gastroparesis, Dysautonimia ETC

    Tayarra Smith | , Sherman’s Disease, #CyclicVomitingSyndrome & spine GI issues

    Grace Nicole | Schitzophrenia

    Rachel StarLive | Schitzophrenia

    Shane Dawson | Depression & Body Dysmorphic Diisorder

    Izzy MS | #MultipleSclerosis

    Chronically Lyss | #Arthritis

    Ellen Jones | Autism

    Kay Maynard | Autism

    MaxluvsMya | Autism

    Rhiannon Salmons | Autism

    The Aspie World | Autism

    Assistance Dog Adventures | Chronic Lyme

    Lemons N Lyme | Chronic Lyme

    Kim And Ross | Lyme, & ME

    Prisha Bathia | Sturge Weber Syndrome

    Lauryn Elizabeth | Hyperprolactinemia

    Shontelle Scott | Gastroparesis

    This Girl Audra | , IBS and OCD

    Gabrielle Ferguson |

    Krissy Mae Cagney | & Celiac

    Steadfast Soul |

    Brooke Houts | #Anxiety & Depression

    Nine and Vine | #BloodCancer

    Jpmetz | MS

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    1 person is talking about this
    Community Voices

    I don’t know what to do. Maybe the feelings and thoughts are from only having two hours of sleep. Yes i know she has been without anxiety help for the last 3 months and her Usher’s Syndrom/Retinitis Pigmentosa is getting worse. I know she is upset that i am never in the mood and work night while she works days. Yes i know the kids have been little jerks these last couple months and the house is a mess.

    Some days i want to just walk out the door and vanish. Somedays when the yelling gets to much i want to just load the kids up and leave. I was raised being yelled down to and it takes all my power not to lose my ever loving mind when my wife does it over stupid stuff.

    Am i happy? No but i don’t remember last time i was.
    Why do I stay? Because she stayed when i was at my lowest and pulled me up so my head was at least above the muck. I love my wife even when she yells over stupid stuff.

    But tonight....... I want to just leave and take the kids with. But as i said this might just be from lack of sleep.

    4 people are talking about this