Bone Cancer

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    Community Voices
    Elizabeth Murphy

    I'm Sorry I Haven't Been a Great Friend

    Ever since the onset of my fibromyalgia symptoms, I’ve lost a lot of friends. Some of it was natural; I started getting sick when I was 18 and just beginning college, which is a transitional time anyway. But some people have drifted away because they think I don’t have time for them, or because I was always canceling plans and after awhile they stopped inviting me. I understand why they feel hurt or angry. I would too, if it were my friend who never seemed to have time for me. It also doesn’t help that I’m a private person, and so I wasn’t telling everyone all the gory details of why I was never up for hanging out anymore. A lot of people probably felt like I’d abandoned them. For all my friends who’ve felt that way, I’m sorry. Becoming a shitty loved one for awhile can be a side effect of chronic illness, especially when you’re young and still trying to figure out all of your life, not just your new life with your symptoms. I am truly sorry for letting people fade out of my life, and I’m grateful to everyone who stuck around. For a long time, my fibromyalgia didn’t have a name. All I knew was I had a lot of mysterious symptoms — constant kidney infections, dizziness, fatigue, deep aches in my body that seemed to go all the way to the bone. I was in my late teens and early twenties, taking my first steps into college and the professional world. In my spare time, I enjoyed going to the doctor, getting blood drawn and urine samples taken and antibiotics prescribed. I was tested for everything from anemia to bone cancer, totally confusing my general practitioner in the process. During this period, my symptoms were basically labeled “mysterious chronic illness.” That was fun. I tried to, as my mother says, “keep on keeping on,” and for the most part, I did. I went to school full-time, or almost full-time. I worked. I did a capstone course for my major. I even wrote a novel. I did a pretty good job of living a normal life despite the symptoms. But you can’t do everything; eventually, something’s going to fall by the wayside. In my case, it was my friends. It didn’t happen all at once. People started drifting away after the third or fourth time in a row of me canceling plans because I was too tired, or because I never could commit to hanging out, or because I would respond to a “what’s up?” text two weeks later. I felt bad; I’ve always loved my friends, and even though I’m not an extrovert, I enjoy spending time with the people I’m close to. But going to work and school was taking up so much of my energy, I didn’t have enough left to make the effort I needed to. I don’t blame my friends. Like I said, I’m a private person, and I felt weirdly ashamed of having a chronic illness. I don’t know why. Maybe I was worried people wouldn’t believe me, or maybe I just didn’t want anyone to feel sorry for me. So from their perspective, it just looked like I was ghosting them for no reason. I was going on social media less frequently too, which closed off the one channel of communication that’s both easy and practically universal. I was missing out on the important things in their lives. I was becoming a terrible friend. I knew it, and I felt terrible about it, but I was too tired to do anything about it, even though I wanted to. Does that sound awful? It did to me. But a big part of my experience with chronic illness is that a lot of times, what I want to do and what I’m able to do are at odds. This is also why I’m still in college after five years. So as weird and selfish as it might sound to say that I really did want to make time for my friends but couldn’t, it’s true. Recently, I’ve started trying harder to spend time with people. I’ve been sick for awhile, so I’ve learned the drill. It’s easier to work my life around my symptoms after five years of practice. I have a more flexible job too, and I’m taking most of my classes online this semester. I’m still not perfect. I still cancel plans sometimes. I don’t go out with my friends as often as I’d like to. But I’m glad that people still want to spend time with me, and I try to make the most of the time I do spend with my friends. I’m truly grateful for the people who understand my limitations and are willing to work with me: inviting me to do daytime stuff because I have trouble staying out late, giving me advance notice about events, being flexible if I’m a couple of minutes late. I’m happy I have people who will meet me halfway, and I’m meeting them halfway too. I’m working on being more open about what I can and can’t do, and about what having fibromyalgia means. I haven’t become the pied piper of chronic illness, but explaining a little bit about fibromyalgia to my friends helps us understand each other better. I’m thankful for all the great people in my life, and I know that the more I get used to life with a chronic illness, the more my life will get back to normal.

    Nori Garcia

    You Don't Know the Pain My Body Has Endured With Chronic Illness

    Today, I got told by someone, “I wish I had your body.” So many thoughts came rushing to me, yet I had no words. So, it stayed with me, everything I should have said. Often we compare ourselves to others without knowing the whole truth. See, my body, a body that has undergone 13 surgeries due to bone cancer since the age of 12 to now 36. My body, the one with a total femur replacement and 16-inch scars on each side of my thigh. This body that is chronically ill and tired with lymphedema due to all those surgeries and years spent stuck in a bed till it could learn to walk again. This body that has to wear compression 24/7 to make sure it doesn’t swell. This body I have to move, yet rest at the same time so I don’t totally crash and burn and have to spend days in bed. This body that has to wear heels all the time, and yes, I look very stylish and hot, but it’s been a product of losing range of motion, so walking in flats is nearly impossible. So, others assume I’m just high maintenance and vain. This body that, at moments, is ridden with the worst of pains. Would you still want my body after knowing all this? Why do I share this, you may ask. I’ve had to learn to love the same body that feels like it’s constantly betraying me. I’ve had to come to terms with it and learn to worship it and be grateful because it got me here. This body that carries this mind and soul that keeps pushing me to dream and never allows myself to get to such a broken place that I cannot pull myself out of it. This body knows love and has experienced some of the most beautiful moments one could dream of. Next time you think you wish you had someone else’s body and you hate on your own, remember we never know what someone has truly lived or what they cover up because it’s the only armor they know. Take a moment to appreciate that body of yours. For it’s carried you to this moment. Because with all its flaws, it’s also so beautiful and incredible. Truly a work of art. After all, we are all perfectly imperfect. Bask in the glory of that.

    Community Voices

    You are not Alone in your Cancer Journey

    My best friend's husband was diagnosed with osteosarcoma 3 years ago and has been battling for his life since. It has been an ongoing tumultuous road of ups and downs for all of us, but recently he found some sense of control over the disease through words. He started this blog originally as a way to have an outlet, but it has slowly morphed into his way of being able to reach people to let them know they are not alone. He felt it was impossible to find forthcoming information when he was first diagnosed and hated that he felt no one was there to answer the many questions he had. His blog is an honest perspective of his cancer journey from many different viewpoints, which he hopes will reach anyone touched by cancer in any way. Check it out, whether you yourself have been diagnosed or are helping to support a friend or family member, I hope it will help you feel like you have a friend to help you through your journey.
    www.othercword.com
    www.instagram.com/steve_othercword
    #Cancer #Osteosarcoma #BoneCancer

    Community Voices

    How my life with chronic rare diseases, can be okay.

    Prior to March 11th 2014 I lived a fairly normal life. I had gone to College, worked my whole life and had raised an amazing Son. Granted, I had some illnesses here and there. Bronchitis, surgery on my knee and some issues with Endometriomas. However, nothing could have prepared me for what was to come. In January 2014 I started having extreme pain in my left shoulder. The only way I could describe it was that it felt like someone was stabbing me with an ice pick. It was a pain that I had never felt before. One Doctor thought it was tendinitis. I wasn’t sure what it was, but I knew it wasn’t tendinitis. I asked the Doctor to do an MRI. About a week later the woman who answered the phone at my Doctors office casually mentioned that the MRI showed #AvascularNecrosis. When I told a friend, who was a nurse, that I found out what was wrong with my shoulder and that it was Avascular Necrosis, her response was “Oh God”. I had never heard of Avascular Necrosis so, needless to say, her reaction had me worried. I did some google research and what I found proved my friends reaction was appropriate.

    Avascular Necrosis, or AVN, is a disease that causes the bones to die. This is due to a loss of blood supply. There are different things that can cause this to happen. In my case it was caused by multiple blood clotting factors and steroids. In fact, 8 months later, I was diagnosed with a rare clotting disorder called May-Thurner Syndrome. The other clotting factors, found after extensive blood work, were a high Factor V111, high Homocysteine, positive for MTHFR and PAI-1. I am on Coumaden for these issues. AVN typically affects the hips, shoulders and knees, but can affect any bone in the body. Some people get it in one joint, others in multiple joints. It is most easily diagnosed by getting an MRI. There are stages of this disease and the early stages don’t show up on an x-ray. Because the bones are “dying” the pain from AVN is extreme. It is documented that the pain from AVN is second only to #BoneCancer.

    Shortly after being diagnosed with AVN I got a second opinion. That was with Dr Dubler who has been my Doctor ever since. On March 26th 2014 I had my first surgery called a Core Decompression, or CD for short. This is where the Doctor drills small holes into the bone. This releases pressure in the bone to help the pain. It’s also done to try and allow blood flow to start again. It is not a guarantee surgery but is the least invasive surgery for this disease. There are others such as bone grafting, stem cell surgery and joint replacement. Joint replacement is the only surgery that remove AVN from the affected joint. My Core Decompression surgery was a success. A week and a half later I was pain free! I was so happy that it worked and I was done with AVN. I was also so wrong. I currently have AVN in 15 joints and bones. I have had 4 Core Decompression surgeries, 1 Bone Graft and a left knee replacement. It has been a very painful 4 years. At first I cried every time a new joint was diagnosed. I was so scared about how this was going to affect my quality of life. Also, I didn’t know anyone who had Avascular Necrosis. Thankfully I found an amazing support group on Facebook. Now I know that I’m not alone. To clarify, my family and friends are extremely supportive and helpful. But the people in the support group truly know what I am going through. Can truly understand the pain this disease causes. We are all there to support each other and I would be lost without it. I’ve had people ask me how I stay so positive. I tell them this. I have AVN, there is nothing I can do to change that. The only thing I can control is how I react to it. I can be positive and have AVN or I can be negative and have AVN. Either way, I still have it. So, to the best of my ability, I try to stay as positive as I can.

    Along with the AVN and May-Thurner Syndrome, I have had some other health issues over these past 4 years. In May of 2016 I was diagnosed with a small brain Aneurism. In June 2016 I started having excruciating pain on the left side of my face and head. The pain was worse than my AVN pain. I could barely keep my eye open. I didn’t want to talk and was having a hard time even eating. Three weeks later I was at the ER. I was diagnosed with #TrigeminalNeuralgia. It’s a rare disease that affects the nerves on one side of the head. Thankfully the medication they prescribed helped! I was so relieved that I was able to find something that helped. Pain from 3 diseases was just too much. In July 2016 I broke my foot, ankle and knee. I had surgery to put screws in my ankle.

    As I previously said, a joint replacement is the only thing can can “cure” AVN in a given joint. In March 2017, after a difficult 2016, I was finally going to have my first joint replacement! I was so happy. It’s kind of sad to be so excited over having that type if surgery. I was having the surgery on my left knee. After waking up from the surgery the AVN pain was gone! 3 hours later I was walking with a walker around the perimeter of the floor. I was even able to do a couple stairs just holding the railings! I was able to do every exercise that PT wanted me to do. They said that they rarely saw someone who did as well as I did, after this type of surgery. On day 3 my Range of Motion was 105 degrees, which is almost unheard of. I was going home that day. They thought I would probably be walking unaided in about a month!

    About an hour before I was being discharged, my friend Laurie and I had just finished a gourmet meal. The Hospital gives a gourmet meal to the patient and a guest. A PA came in to give me e discharge paperwork. He came over to the chair I was sitting in and asked to see me bend my knee. I did and for some reason he proceeded to shove my leg so hard that my body actually came out of the chair! My friend was horrified! My entire leg swelled, the pain was blinding, but the worst thing was that I was unable to lift my leg! Could not lift it even a millimeter off the floor. I did go home but my friend and the taxi driver had to lift my leg to get in the car. It took 2 people to get me in my house. It was horrible. The next morning the Visiting Nurse came. She took one look at me and had me go back to the Hospital. When my Doctor saw my leg, he was in shock. He had just seen me doing so well the day before. When PT came they were shocked as well. During the week I was there, they could not find where the damage was. My Doctor had that PA come and apologize to me and to “see what he did”. After I was discharged and went home I was having a very difficult time. I couldn’t walk without the walker, I couldn’t lift my leg and I was in so much pain. I just couldn’t believe that this happened. I had been doing so well and was so happy. 60 seconds and everything was changed. And not for the better. I had PT 3 times a week for 8 weeks. Then my insurance wouldn’t cover it anymore as I had made no progress. I had an EMG test. This test shows how the nerves and muscles are working. It showed severe nerve damage and no muscle activity from my hip to my toes. I had no reflexes and a dropped foot. I also had many MRIs to see if they could find anything that would help me. I saw specialists who could not figure out how to fix it. A year and a half has gone by. I still can’t walk, can’t lift my leg and have no reflexes is. After 4 EMGs, the Neurologist and my Orthopedic Doctor feel that it is permanent. So, I have had to adjust to my “new normal”. Thankfully I have wonderful friends and family who have helped me so much. I can’t leave the house by myself, can’t do my laundry or take out the trash and recycling. I can’t even get my mail. I do try and stay positive though. Sometimes it’s hard because I really don’t know what the future holds. So, I try to stay in the day.

    My hope is, that by sharing my story, I may be able to help someone else who may be going through the same thing. Especially with rare diseases, it can be hard to find someone who understands.

    Community Voices

    So I’m going to share something deeply personal with you guys & it’s just one of many personal things I may share. So my adopted mom (all my friends & other people since I was 6 know her as “my aunt” as my mom was very in & out of my life. So ..) well she has cancer .. bone cancer which I think she’s beating but not too sure. But she also has really bad dementia. I mean she can still remember who I am but she can be so mean & say such hurtful things. I mean .. our relationship as I was growing up was NOT the best. We definitely had a love/hate relationship. She played favoritism towards “my cousin” (adopted sister) & seemed to always find a way to make me feel worse about myself. But she also knew how to pick me up & reminded me of how strong I was. Back in 5th grade I was getting bullied so bad that I wrote a note to my friend & told her I wanted to jump off the roof. This friend went to the teacher & the teacher did what she needed. At the time I couldn’t believe my friend would betray my trust this way .. now I am forever grateful. Anyway .. so they call the police, at the time I was in foster care so they called my social worker, my adopted mom & they’re ready to take me to a mental institution. I mean can’t blame them right? I did just threaten to kill my self. But my adopted mom steps up & she says NO. She’s not going. She’s going HOME WITH ME. WHERE SHE BELONGS. She’s NOT crazy. It was the first time someone had said it to me. I didn’t myself quite believe it. Some days I still kinda feel like I’m losing my mind. But it meant everything to me that she believed that strongly in me. They put me on medication of course, I had to see a therapist. But I never really took therapy all that serious (another story for another time) anyway a year & a half later she says to me .. you don’t need this. You’re stronger than this. I know it. You need to know it too. & she took me off the anti depressant. & I tried for years to live up to her expectations that I didn’t need it. I wouldn’t really even acknowledge the fact that I had depression or anxiety until very recently. (After what I went through last year. Yet again, another story for another time.) & tbh I think the worst thing we can do is pretend our problems don’t exist or aren’t important because they’re a disease of the mind. They are just as important & we need to acknowledge that they are just as serious as cancer, heart issues, diabetes, hypertension & any other disease that can kill you. Because depression/anxiety can. But in the worst way, the silent, lonely way. So don’t be afraid to ask for help. Or to say I’m not okay. Take time to heal yourself. Whatever that may look like for you. & I’m always here if anyone needs to talk! ✨🖤

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    Community Voices

    Cats purring frequency is said aid in healing

    I read these types of articles everywhere and I believe it true

    How Could Purrs Help Humans Heal?
    For centuries, healers have used the power of sound in their work. It is believed that certain frequencies or tones of sound can have varying healing effects on the body. Here are some of the ways that purrs might help humans with health concerns:

    Purring releases endorphins in cats, and it can do the same thing in humans, too. Lowered stress hormones are helpful for healing, lowering blood pressure, and helping people cope with illness, too.
    Cat purring has been shown to fall between 25 and 140 Hz. The same frequency has been shown to aid in the healing of broken bones, joint and tendon repair, and wound healing. Cats are well-known for their ability to heal quickly from their own broken bones, and the incidences of joint problems and bone cancer in cats are low. It's possible that cat purrs can help humans heal faster, too.
    Clinical observations of cats that are suffering from upper respiratory conditions resulting in dyspnea, or trouble breathing, indicate that purring helps the cat breathe more easily. In fact, respiratory distress related to heart disease isn't nearly as common in cats as it is in dogs and humans. A person with respiratory problems might also be able to breathe easier if a purring cat is nearby.
    There are many stories of people with migraines whose headaches are eased or extinguished when they lie with their heads close to purring cats. #catsheal , #catssenseillness

    'Top Chef' Season 15 Fan Favorite Fatima Ali Dies at 29

    ‘Top Chef’ contestant Fatima Ali died Friday at the age of 29, her family confirmed on her Instagram. Ali was voted “fan favorite” on season 15 of Bravo’s cooking competition show. She placed seventh in the competition. Her family wrote on her Instagram: Fatima was at home with us, surrounded by her loved ones and beloved cat Mr. Meow, when she left us in the early hours of the morning. When someone as bright and young and vivacious as our Fati passes, the only metaphor that seems to fit is that of a star—a beacon in the darkness, a light that guides us, on which to make wishes, from which to weave dreams. For all the comfort and beauty they offer us, stars, too, are impermanent. This morning a great one was snuffed out.Though she’s no longer here with us, her spirit will continue to steer us. We hope that you, too, will listen to her lessons: Live your life as she did—to the fullest. Pursue your passion; spread love and joy; be kind and forgiving; be generous; enjoy every morsel—from humble street food to decadent fine dining; cook for the people you love. Travel the world and seek out adventure. Help others and don’t be afraid to take the road less taken. Fatima will always be a part of us, and in fact if you look deep enough, you may find your own inner Fati. If you’re lucky enough to find her there, trust her, listen to her, because she will change your life for the better.We’ve learned a great deal over the course of her illness, not only pragmatic lessons we wish we hadn’t needed to learn about her disease and our health system, but about the immense love of which people are capable; about the power of being true to yourself; about how we can be better if we model ourselves after someone like her.We want to thank everyone from the bottom of our now broken hearts. We’re eternally grateful for the unending support, love, and generosity shown by people along the way—from random strangers we passed on the street who would tell her how much they admire and respect her; to all her doctors and nurses who did their best; the chefs and hospitality friends who are now part of our extended family; and the big wigs that reached out to see how they can make her dreams a reality. This has been a truly humbling experience for us all and even in her last chapter as she began to leave us, Fatima showed us how we should live. In January 2018, Ali underwent chemotherapy and surgery for Ewing’s sarcoma, a rare form of bone cancer. Ali revealed in September that the cancer was back. Doctors told her it had metastasized and she had a year left to live. In an essay for ‘Bon Appetit,’ Ali wrote: The cancer cells my doctors believed had vanished are back with a vengeance in my left hip and femur bone. My oncologist has told me that I have a year to live, with or without the new chemotherapy regimen. I was looking forward to being 30, flirty, and thriving. Guess I have to step it up on the flirting. I have no time to lose. Ali said she wanted to spend the rest of her time eating at the world’s best restaurants. Fans and friends shared their condolences and memories with Ali on Twitter. Goodbye lil’ sis. One of our brightest stars has fallen from the sky…. I have no words, but here are some of hers: “I dream of being better. I dream of being myself again, but I know I’ll never quite be the same, and that’s okay. I look forward to meeting that woman one day.” pic.twitter.com/JThpUIbtk7— Padma Lakshmi (@PadmaLakshmi) January 26, 2019 It’s with a heavy heart we say goodbye to Fatima Ali today, as she has lost her battle with cancer. I will miss you Fati, and you will be in my heart forever. I’ll always remember the great times we had, especially our interview during the tailgating e… https://t.co/GYTQWMwfvT pic.twitter.com/72uWNxL3g8— Bruce Kalman (@chefbkalman) January 25, 2019 We are deeply saddened to hear the news that Fatima Ali lost her courageous battle with cancer. Our thoughts are with her family at this time. People not only fell in love with her cooking, but fell in love with her personality and heart. ???? pic.twitter.com/pKoZG7BDIk— Bravo's Top Chef (@BravoTopChef) January 25, 2019 I’ll share some words told to me by Chef Fatima Ali, “Life is short and fickle, and you have to embrace it full force.” A wonderful philosophy from a vibrant, talented woman. RIP, Chef Fati.— Tiffany (@MissTiffanyTiff) January 25, 2019 Ughhh, fuuuuuuuck cancer. RIP to my favorite Top Chef competitor ever, Chef Fatima Ali. She was so great. pic.twitter.com/OvnKjUyvSk— Vince Mancini (@VinceMancini) January 25, 2019

    Community Voices

    Fibromyalgia Diagnosis (my experience)


    The day I was diagnosed with fibromyalgia was as odd as it sounds a happy day for me. It was 6- months ago now but I finally had an answer that explained the ‘ghost pain’ I was experiencing!

    I call it ghost pain because I experience debilitating random pain in areas that I’d not injured and had no explanation for. There one day gone the next.

    I was happy because as shitty as the diagnosis is, I was relieved that I didn’t have bone cancer or more severe joint problems as I’d first thought.

    Everything made sense when I was diagnosed. I couldn’t believe my eyes when my doctor gave me the pamphlet on fibromyalgia. It was like reading a story about myself.

    I guess what frustrated me was the years of misdiagnosis, from a twisted pelvis, tight glute muscles, knots in my neck and shoulder muscles. I supposedly carried stress in my back. Had gout without crystals and was magnesium deficient because my muscles were weak. Insomnia was related to work stress. Countless MRIs for migraines and joint pain that confirmed nothing was wrong. Excruciating foot pain that lasted months then magically disappeared overnight! The list goes on.

    I’m so much more at ease now I have a diagnosis because I know what’s causing my pain. The stress that comes from not knowing was eating me up and making me miserable. I occasionally cry when the pain gets really severe or is constant but I no longer cry because I don’t know what’s wrong. And that’s a huge step forward for me.

    Why did it take 20+ years to diagnose me?

    Once I was diagnosed by a rheumatologist, he gave me a prescription for three nights worth of sleeping pills/muscle relaxants. I can’t tell you how much better I felt after just three nights.

    I also began exercising more (walking and stepper) to help with sleep and began taking MCT oil in my morning coffee which helps tremendously with getting rid of brain fog. I’m still quite fatigued but life is so much better because I am more positive.

    I returned to scuba diving last week too thanks to my supportive husband who carried my tank and washed my gear because he knows the dive alone exhausted me.

    I now find a way to do the things I love and have things planned so I have things to look forward to (no matter how small) because otherwise this terrible condition will get the better of me.

    I’m also so grateful to find this group simply because there are people who understand what I’m going through. You guys make me feel normal- if you know what I mean. Hugs xx#Fibromyalgia

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    Community Voices

    Fibromyalgia Diagnosis (my experience)

    The day I was diagnosed with fibromyalgia was as odd as it sounds a happy day for me. I finally had an answer that explained the ‘ghost pain’ I was experiencing!

    I call it ghost pain because I experience debilitating random pain in areas that I’d not injured and had no explanation for. There one day gone the next.

    I was happy because as shitty as the diagnosis is, I was relieved that I didn’t have bone cancer or more severe joint problems as I’d first thought.

    Everything made sense when I was diagnosed. I couldn’t believe my eyes when my doctor gave me the pamphlet on fibromyalgia. It was like reading a story about myself.

    I guess what frustrated me was the years of misdiagnosis, from a twisted pelvis, tight glute muscles, knots in my neck and shoulder muscles. I supposedly carried stress in my back. Had gout without crystals and was magnesium deficient because my muscles were weak. Insomnia was related to work stress. Countless MRIs for migraines and joint pain that confirmed nothing was wrong. Excruciating foot pain that lasted months then magically disappeared overnight! The list goes on.

    I’m so much more at ease now I have a diagnosis because I know what’s causing my pain. The stress that comes from not knowing was eating me up and making me miserable. I occasionally cry when the pain gets really severe or is constant but I no longer cry because I don’t know what’s wrong. And that’s a huge step forward for me.

    Why did it take 20+ years to diagnose me?

    One I was diagnosed by a rheumatologist, he gave me a prescription for three nights worth of sleeping pills/muscle relaxants. I can’t tell you how much better I felt after just three nights.

    I also began exercising more (walking and stepper) to help with sleep and began taking MCT oil in my morning coffee which helps tremendously with getting rid of brain fog. I’m still quite fatigued but life is so much better because I am more positive.

    I returned to scuba diving last week too thanks to my supportive husband who carried my tank and washed my gear because he knows the dive alone exhausted me.

    I now find a way to do the things I love and have things planned so I have things to look forward to (no matter how small) because otherwise this terrible condition will get the better of me.

    I’m also so grateful to find this group simply because there are people who understand what I’m going through. You guys make me feel normal- if you know what I mean. Hugs xx