It just goes away…” prejudice against people with Sarcoidosis

I had to share this article that was posted today in my Inspire.com Stop Sarcoidosis group. This article speaks to the many Sarcoidosis sufferers that deal with the misinformation that is place via the internet and medical journals. As many of you know, Sarcoidosis sufferers are like “snowflakes.” We all fall under the diagnosis of Sarcoidosis, but are different in how the disease itself affects us. Please read and help us spread awareness about this debilitating disease.
Thanking you in advance
Marilyn

It just goes away…” prejudice against people with Sarcoidosis

By kulahaw · Yesterday at 9:03 Shared with the public

If you do a general search on the internet and through PubMed government medical journal articles, the most common introduction to Sarcoidosis as a disease is… “It just goes away on its own…” This is such an obvious and blatant disregard to those that suffer from the disease. If anyone of any influence on the medical community wishes to make a profound impact upon the lives of those living with Sarcoidosis would be to advocate for the removal of this attitude, an obvious prejudice that places patients at a significant disadvantage seeking treatment, getting a medical professional to “listen to you” as you describe symptoms and complications, accessing SSDI due to a plethora of disabling ailments and complications, and just informing friends and family of why you are suffering. I have been suffering from Sarcoidosis for 10 years. Prednisone cleared the lung complications after 3 years, but left me with Neuropathy and Sarcoid of the liver, that were not resolved. I live in constant pain and can gather no sympathy or compassion from medical professionals and persons close to me due to this flippant attitude towards Sarcoidosis. Sarcoidosis is still so misunderstood and misdiagnosed.

We need more advocacy!

Carrie Ann Ryan’s “Tangled Innocence”

 

Dante’s Circle Book 4

 

Humans aren’t as alone as they choose to believe. Every human possesses a trait of supernatural that lays dormant within their genetic make-up. Centuries of diluting and breeding have allowed humans to think they are alone and untouched by magic. But what happens when something changes?

 

As one of the seven lightning struck women, Nadie Morgan has known for a while now that her fate would be forever changed…and revolve around a certain dragon. From the first time Dante Bell saw Nadie, he knew she was the one for him. There’s just one problem–there’s another in his life he’s waiting on as well.

 

When Jace Goodwin, a bear shifter and Mediator, finally comes back to the human realm after years away under circumstances out of his control, his first stop is to Dante’s Circle where he not only finds his dragon, but the woman they both have been waiting for.

 

Once secrets are told and the sparks fly, Nadie’s new life becomes something she never thought possible. However there’s another realm at play and Jace and Nadie’s dragon will have to fight harder than he’s ever fought before to keep the life he’s waited eons for.

 

Warning: Contains one not-so-innocent human, a bear known for his bear-hugs, a tattooed and pierced dragon with a fiery temper, and a connection so explosive, you’ll be fanning yourself from page one.

TangledInnocence_pic

 

Review:

Well it was definitely worth the wait! Carrie Ann Ryan hit it out of the park again! I’ve waited for the story of Dante and Nadie for so long. There was so much pent up energy as their story line drew near. The stares between the two, back and forth at the bar during the girls night out sequences. And to add another mate to the mix?! Wow, Carrie Ann, what sugar you drinking on to inspire your characters? I want some of that! LOL But Seriously, she never let’s me down with her novel’s and that’s why she is a best seller.

This story had it all and I think the best fight sequences out of all the Dante’s Circle Series. The fact that even after a very long wait to be able to mate with Nadie and Jace, the possibility of deterring it longer would make any man/dragon go off the deep end. Nadie unable to wait any long for Dante to make the first move, chose to make  a decision that could cost them the possibility of a relationship in the long run. And let’s not forget the missing link that Nadie is not even made aware of, Jace. He was finishing up his duties as a Mediator of the Realms that took sometimes years to complete.

Okay Carrie Ann Ryan, on to the next.  Looking forward to the next installment of Dante’s Circle. 🙂

Dust of My Wings

Her Warriors’ Three Wishes

An Unlucky Moon

His Choice

Tangled Innocence

Fierce Enchantment – Coming Soon 2015

An Immortal’s Song

Prowled Darkness

Check out all of Carrie Ann Ryan’s Novels by visiting:

http://carrieannryan.com

Living with Chronic Pain…Author Unknown

What happens when the pain is so indescribable and you are at a loss as to what to do…crazy thoughts enter into your head as you would do anything to make the pain stop. You cry and feel so alone because you feel no one does or can understand…you know its not in your head, the doctors are at a loss feeling they have done all that they can do….what do you do…where do you turn? What do you do when your body betrays you? What do when your pain is so intolerable that you make try to make deals with God to just ease up on the pain…you live in anger and fear of not knowing if you can make it to the next moment. Sleep is something that offers no peace or relief…What do you do?
Having and living with Chronic Pain means the shattering of lives and many things in life changes forever, and a lot of them are invisible, as we are living with rage, the pain, the rejection, failure and even the frustration. The persistence of Chronic Pain can become a major obstacle when trying to live one’s life. Chronic pain disables more people than cancer or heart disease. Most people do not understand even a little about the severity of living with Chronic Pain and its effects, and of those that think they know, many are actually misinformed. For those of us who live 24/7 with the Chronic Pain, there is often a desperation to find something, just anything that will relieve us of the seemingly never-ending pain.
In the spirit of informing those who wish to understand: It’s difficult to make you understand something you have not experienced but I guaranteed that you know someone within your life that is experiencing Chronic Pain. These are the things that many of us would like you to understand about us before you pick up your gavel and put on your robe of Judgment.
The reality of Chronic Pain is that it can cause patients to alienate those around them and often leads to drug addiction, irritability and depression. Physical, psychological, and emotional stress may worsen with chronic pain. While Chronic Pain is not all in our heads, our psychological state plays a huge role in the effect it has on our life. There is no magic pill or cure to relieve Chronic Pain or its underlying conditions, so please understand that being sick and in horrible pain, doesn’t mean that any of us are not still Human Being with feelings. We spend most of our days in considerable pain and exhaustion, and if you visit, sometimes we probably don’t seem like much fun to be with or around, but we are still us, stuck inside the shell of our bodies. Daily we worry about work, our family, our friends, and most of the time, we would still like to hear about what is going on in your life and in the world that many of us are no longer apart of.
There is a big difference between being “Happy” and being “Healthy”. When you’ve get the flu, you probably feel miserable with it, but many of us have been sick for years. We strive to not be miserable all the time. In fact, we work hard at not being miserable. So, if you’re talking to us and we sound happy, it means we are determined to be happy, that’s all. It doesn’t mean that we not in a lot of pain, or extremely tired, or that we are getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” , and trust and believe we are not looking for your pity, for we are simply doing what we need to do to stay coping with our lives.
Please understand that being able to stand up for a few minutes doesn’t necessarily mean that we can stand up for hours, or an hours but believe that we do try. Chronic Pain gets more confusing and frustrating everyday. It can be like a yo-yo. Because you never know from day to day, how you are going to feel when you wake up, that’s even if you are able to sleep because of the extreme pain. In most cases, we never know from minute to minute. That is one of the hardest and most frustrating components of living striving and surviving Chronic Pain.
Chronic pain affect our daily “sitting”, “walking”, “thinking”, “concentrating”, “working”, “being sociable”, “participating” and sometimes even “talking”, and so on, it applies to everything and every area of our lives. That’s what Chronic Pain does to you. Please be aware that chronic pain is a variable, and that our Chronic Pain is not mean to affect you intentionally so please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make us feel better, and it can often make many of us feel more seriously worse. You don’t know and can’t imagine what we go through or how we suffer in my own private time. Telling us that we need to lose weight, exercise, or do some things to “get our mind off of it”, may frustrate many of us to unshakable tears. If we were capable of doing some things any or all of the time, don’t you know that we would or we would give it out best try. You can’t fully understand unless you truly are capable of walking in our shoes. So many of us are working with doctors and doing what we are supposed to do just to get some understanding about our lives and how to just make it through to the next day. Another statement that hurts us is, “You just need to push yourself more, try harder”. Obviously, Chronic Pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on or faces or in our body language. Also, Chronic Pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
You have to be understanding, that if we say we have to sit down, lie down, stay in bed, or take these pills now, that probably means that we are doing what we have to do right now in that moment and understanding is necessary on your part, it can’t be put off or forgotten just because we may be somewhere, or we may be right in the middle of doing something. Chronic Pain does not discriminate, forgive, nor does it wait for anyone.
If you want to suggest a cure to many of us, no disrespect to any of you but please don’t. It’s not because we don’t appreciate the thought, and it’s not because we don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have we. In some cases, we have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make many of us feel even lower. If there were something that cured, or even helped people with our form of Chronic Pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. We may take what you said and discuss it with our doctors.
If at times we may seem touchy, it’s probably because we are. It’s not because we try to be. As a matter of fact, many of us try very hard to be normal. We just hope and need for you to try to understand, as we have been, and am still, going through a lot. Chronic Pain is hard for you to understand unless you have had it and experienced the pain and exhaustion that comes with having Chronic Pain. It wreaks havoc on the body and the mind, not to mention our lives. It is exhausting and exasperating. Almost all the time, we know that we are doing our best to cope with this, and live our lives to the best of our ability. We just ask you to bear with each of us, and accept us as we are. We know that you cannot literally understand each of our situations unless you have been in many of our shoes, but as much as is possible, we are asking you to try to just be understanding in general.
In many ways we depend on you, people who are not sick. We so desperately need you to keep our spirits uplifted, motivated and give encouragement while staying positive when we are too sick to go out, participate or even have a conversation. Sometimes we need you to help us with the shopping, the cooking or the even cleaning. We may need you to take us to the doctor, or to the store. As you may be our only link to the “Normalcy” of life. You can help many of us to just keep in touch with the parts of life that we truly miss and fully intend to undertake again, just as soon as we are able.
Many of know that we may be asking a lot from our family, friends, loved ones and even understanding strangers and we do Thank You for listening and understanding for It really does mean more than you can understand. From each of us to one another we say…..May you be blessed in your healing process. May all beings be blessed as you Live, Strive and Survive just living life. May all beings be at peace of mind, body and spirit. Received and shared with Appreciation, Gratitude and Love.
Each day we strive to do the things we think we cannot do for the only way to discover the limits of the possible is to go beyond them to the impossible, as the golden opportunities we are seeking are within ourselves. When we let go of what we are, we become what we might be. When we let go of what we have, we receive what we need. Have you ever struggled to find work, love or a solution to a situation, only to find them after you have given up? Let go, in order to achieve, as letting go is God’s law. Each day we strive to Embrace Life and the Hope of Healing as we brighten our days and nourish our souls!
No matter what your situation or circumstance know that The Devil is a Liar and By His Stripes WE all shall be Healed! Walk by Faith not by Sight, Speak the Miracles of Blessings and Faith into your Life and the Lives of Others as God can make a way out of nothing. Dictate your Power by the words You Speak. Speak Love, Support, Positivism, Prosperity, Encouragement, Understanding and Good Health while maintaining a CAN DO attitude….Know Trust & Believe that YOU ARE NOT ALONE for TOGETHER WE ARE BETTER!
Chronic Pain under any circumstance is so life changing and sometimes words are very indescribable because of the pain. No matter what our situations and circumstance we Can Not Ever GIVE UP. Life is not easy for any of us. We must have positivism, perseverance and above all confidence in ourselves and our lives. We must believe that we are gifted for a purpose in this life, to in someway Help, Support, Encourage, Teach, Uplift and Inspire others. Every pain in our lives becomes an opportunity to share with others for none of us is in this alone. FAITH goes up the stairs LOVE has built and looks out the window which HOPE has opened…We must Heal Our Past, Live Our Present & Dream Our Future for LIFE has so much to offer each of us. Life ends when we stop dreaming, Hope ends when we stop believing, Love ends when we stop caring so live & share your life from your heart & your story will touch & heal other people’s souls, as we reach high for the stars that lie hidden in our soul & never let yesterday’s disappointments overshadow tomorrow’s dreams!
Be Loved, Be Blessed, Be Healed.
Each and EVERYDAY we need to Enlighten our Minds, Open our Hearts & Soothe our Souls as we surround ourselves with things & people with Uplifting Spirits with an Appreciative Attitude who Feed our Souls, Inspire our Hearts & Nourish our Minds!