Bone Cancers

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    Community Voices

    Anxiety - Body and Soul

    Part 1 of 3 Hello Beautiful Ones,

    I love you.

    It’s been a while between blogs!

    Life is busy and moving incredibly fast.I’m even turning 25 next year. No I’m not…My kids are a mix of near adults and pre-teens and the hairs on both the adult heads are getting more grey as each day passes.

    Also, we take collagen now. Like real old people do.  I asked my 90 year old Nana today, how old she felt – “ Not a day over 21 love.”

    Time is a vapour. A simultaneous thief and gift.

    So I’m gonna head right in to this convo: #Anxiety .
    #Depression .

    I wish I knew their names 20 years ago. It was weird growing up in the 90’s with quite a common heredity predisposition to #Anxiety , yet having no clue whatsoever as to what was going on in my body. Since a diagnosis later in my life, I have spent the best part of the last 15 years wrestling with God about my own journey through #GeneralizedAnxietyDisorder ( Generalised  #Anxiety Disorder). In the very beginning I screamed to Him, punched walls in frustration, removed myself from social settings, blamed God, blamed myself. It wasn’t until I got some real revelations about God and some real education about my condition that healing truly begun. Here is a little bit of my story so far.

    The Back Story :

    Since I can remember, #Anxiety has been a part of my life, of me. I wasn’t just scared of the dark, I lived in constant fear of death of a loved one, of being alone, I had #PanicAttacks all through primary school which worsened in high school. I grew up assuming this all-consuming sensation that took over my body and left me exhausted and petrified, was normal. It didn’t have a name until I was 23 and gave birth to my first child Samuel. Sammy had some complications during birth and his heart rate dropped rapidly putting his life at risk. At a time that my Mum expected me to completely freak out and lose my mind with panic- I actually went numb. My body decided it was too much and shut down to protect the amount of #Anxiety my body had produced. Post-Natal #Anxiety Activated. Looking back- knowing my condition then would have changed everything.What followed was 3 months of the closest thing to hell I have ever experienced. I couldn’t eat for 3 months, I was given nutrient shakes (vom) made by my family to keep me going. I couldn’t sleep for 3 months. I know that sounds strange and extreme, but it is what it is. My body and nerves were so over-sensitised that sleeping wasn’t an option. Sleeping tablets did nothing. I found myself in the emergency room at hospital with heart machines monitoring potential heart #Arrhythmia / heart attack. My body shook with constant adrenaline for weeks, essentially, in a constant #PanicAttack for the first month of my child’s life. Thankfully my family loved on him like no other love I have seen.

    As I began to see doctors and receive therapy and education I learned that what I had my entire life wasn’t a spiritual attack, it was a physical condition. Just as is #Diabetes , #Hypertension etc, my brain chemistry came in a certain package from birth and I now had to make adjustments, accept treatment and medication to help me live the best life I can. It was the best thing I have ever done in my life.

    My journey with #Anxiety and God really began here. Years of wrestling where God fits into #MentalHealth and where #MentalHealth fits into me and who I was created to be.
    Here is a few things I’ve learned along the way:

    1) #MentalHealth is a result of chemistry not a flaw in character.

    It is so easy to integrate the 2 but something so significant that I learned is that brain chemistry is as physical as #BoneCancers . If you came home with a broken leg or an open wound- you would be taken to the closest hospital for assessment and treatment. It feels emotional because brain chemistry is the control centre of emotions- that doesn’t mean what you are experiencing is made up or “in your head”- it is literally in your body and sending signals around your core system to feel and experience real symptoms. This is why deep breathing ( 4 seconds in the nose/ 4 seconds out t

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    Community Voices

    How my dad taught me to wait patiently on the lord before he

    Living with pulmonary fibrosis and the death of my dad who died last week.

    Dad had neuropathy and then he had several different #Cancer then he had #BoneCancers . Hospice was called and a few days later he had passed away. Without him knowing it, he taught me to be patient in the waiting I’ve had this rare lung disease for almost a decade now. Being on oxygen 24/7 is a blessing and a reminder that I’m still alive and I just need to wait on the lord and take it day by day, making sure to be good to myself along the way. One day I will be free of my infirmities and will be able to run, jump, hop, & skip weather their in Heaven or here on earth. I know my dad is in Heaven. He is not in any pain anymore. Today is the showing and tomorrow is the funeral. I’m sad to say goodbye. When he had to go, he took a part of me with him. But I will wait patiently on the lord and wait for a healing. Weather that’s here or in Heaven. I still remember he and I were dancing together on my wedding day. Almost 14 years ago. We danced to angel eyes by the Jeff healey band. He looked so handsome that day. & we were both in good health then. I know one day we will be dancing together in Heaven.

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    Community Voices

    How has cancer impacted you or your family’s health story?

    <p>How has <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6a00553f33fe98f050" data-name="cancer" title="cancer" target="_blank">cancer</a> impacted you or your family’s health story?</p>
    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.

    Community Voices

    My little brain. My little scares.

    <p>My little brain. My little scares.</p>
    Community Voices
    Community Voices

    Scared for the future

    I feel like I've kind of given up on taking my life too seriously at the moment and not really in a good way. This past year I've had to give up my amazing once in a lifetime opportunity job, retire from my profession (at the age of 22)due to my EDS getting worse, developed awful sinus problems resulting in only one half of my respiratory system receiving oxygen. Found out that I've got a bone tumor which all my medical professionals have known about for the past 10 years and glossed over by tiptoeing around what it was and playing it down. Also finding out that the excruciating hip pain ive had the last few years, is what they reckon to be a multiple bone tumors growing on the hip joint and is most likely bone cancer - but they are unwilling to do further testing 'until i am in more pain' ... thank you NHS
    I'm away to start uni to get a teaching degree which has always been my dream but i am terrified that I'm going to have to give up on that dream too, I'm really really stressing and worried about the future. #EDS #EhlersDanlosSyndrome #JointHypermobilitySyndrome #Career #scared

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    Community Voices
    Community Voices