This Video hit home with me, When your sick the people you think are there for you are not and the people you don’t expect show up. It’s the hardest lesson learned ever. Your taught as a child that the people closest to you will stand by you, help you and be there for you but it is not always so. There busy, they have to work, spend time with their friends, or are in denial and when your told you have no cure, no treatment and they don’t know what to do, they don’t think your going to die, but they don’t know, it’s a scary place to be, and when the sun goes down, who is there, not who you would expect, It’s not all about me or my illness and frankly I have been told to smell the roses a few to many times and don’t talk about it, you have to feel it, talk about it or you will go nuts in your own mind. Buts its easier to pretend everything is fine that to show up, offer help, offer to talk, offer to sit with you in treatment that makes you so sick. The Journey is mine and not theirs, but in your heart you hope that some of the most important people in your life don’t want to join you in your journey. This Video helped me so much. Please watch. KellyAnne
I recently went to Stanford and I was all positive except the IVIG treatment makes me so sick, but I thought Typical check up, plan the rest of my treatment plan than happy du da day! Well I got to the Autonomic clinic and I see my Dr and I said only 6 more months and I cured right? He looks at me says “No” This IVIG is not treatment for your disease its for the rare antibody we found. There is no cure. I was speechless. I thought that’s what the treatment was for, “No” It was only for the antibody. So I sad there he did a exam and I have definitely gotten worse. Every thing I asked I got the same response, Its part of the disease. So I don’t know what made me come out and ask but I asked “am I going to die?” He said not from this disease, but Kelly you are so rare your disease is so new but Washington Research Institute is doing a lot of studies and a cure can be around the corner, But this disease won’t kill you, we just need to treat the symptoms and keep you comfortable, I didn’t like that response. So I said is there anything I can try? Yes, but there are no study’s that it does or does not work, And you can loose your kidney and liver in the process. I asked would you do it, He looked at me and said “No” I said that means this entire time I am been sicker than a dog for a week every month was for a antibody, yes he said and there is no study that this IVIG is going to do anything for it. So this entire time, I am going through hell only to think It was to make me better and No one has been on my dose, for the length of time that I have been on it. He said I am it??? Yes, I said well do we stop the IVIG, He said no the study from Washington Research Center wants you to finish up to your year mark, do more biopsies see if the antibody is gone, but either way its not a cure so why? Research for other patients, He said you can opt out, I thought to myself I never would have opted in if I knew I was the first. So we will cut it own from 5 days to 3 because days 4 and 5 kill me. So that’s the first appointment. Now I get to see the GI Doctor who basically tells me any of the medications I could get could hurt me more than help me, but would you like to see a nutritionist, For what purpose I ask, I can’t eat, well she can tell you what foods to avoid, I said well It’s easier to say what I can eat, nothing but protein shakes. Well puree your food, I said you don’t understand it hurts to eat whether its a pureed taco, it’ still going to hurt. So she asked if I wanted to have Botox injected down my esophagus, I said isn’t that a little close to my lungs my heart, my swallowing function, yes you would be very risky, ok next option, injections all around my rig cage for the pain from vomiting, ok but that’s temporary, Yes, There is a surgery of putting a pace maker in your stomach but most people don’t like it and you can for sure see it an feel it, okay, what about my Hiatal Hernia, no we don’t want to fix it unless absolutely necessary but we could cut the opening to your stomach to make it easier for food to go down, I was thinking well if you want to cut my stomach opening why wouldn’t you fix the hernia oh because it is not necessary. Oh and Kelly we are moving out of this building and going to redwood city an Emeryville by UC Berkley, So I asked what am I actually following up with you for, doesn’t seem like you want to do anything for me, well you if loose any more weight, As your doctor you would have to have a feeding tube or g button for TPN feedings, I said wait a minute no one seems to care that I have lost so much weight and your response is it’s your Dr’s responsibility to make sure your getting nutrition. So I have to watch you closer so triple up on the protein shakes because I do not want to see you go any lower because that will cause other problems. So What do you say to all that oh and by the way I’m 12 weeks pregnant so I need to get you in after we move and before I take my leave of absence. Yet not one blood test. nothing to check my kidneys from IVIG treatment, just see you soon. I left speechless! Imagine that Speechless. So I had a heavy heart the entire way home. But I will not let this disease define me or take me, I will fight it with all my stubbornness that God gave me and still continue my purpose. I have no control over any of this, I can try to lower stress, I can eat my protein shakes, by the way Costco’s protein shakes taste Nasty. So I sit in the world of I have no plan just keep me on IVIG until December, then its keeping me comfortable. Watch my stress and don’t push to much, listen to my body. Rest when my body says rest. Stay close to those I love and help people with invisible illness get through there journey. That’s all I can do. The left is up to the man upstairs.
What is the EPIC foundation
The EPIC Foundation is a 501C3 non-profit organization that provides support, advocacy, education and tools to those affected by chronic illnesses. The foundation staff, which includes trained psychologists, provides various resources to support patients living with chronic illnesses and their caregivers.
The EPIC Foundation uniquely embraces the mind, body, and spirit, by focusing on key human issues such as trauma and loss. These are the vital issues that are commonly ignored while treating chronic illnesses.
Mission Statement: Empowering People with Invisible Chronic Illness (EPIC) Foundation is a nonprofit organization that seeks to empower those living with chronic illness. EPIC offers support, advocacy, and tools for coping to those living with chronic illness and their loved ones and caregivers, with a particular focus on Cushing’s Syndrome and related illnesses.
Suggestions or comments can be e mailed to The EPIC Foundation at firstname.lastname@example.org
You will find a direct link to their page located to the left of the page. Just click and your there.
I think we can all look back at our lives when we were at a crossroads as to where we are going in life. I remember the stress that hit me in high school of “What do I want to be when I grow up” Your kinda lost, I thought I wanted to be a hairdresser, got my license worked but then realized I wanted to use my brain more and help people, so that’s why I changed careers, but having this illness, I am not longer that occupation I loved, I am no longer the person I used to be and I have grieved that and trying to find out where I fit in now, and where I will fit in the future. I don’t know. But I can tell you I am to sick to even think about it, I need to save my energy for my treatment and my getting better, So I have to let it go and just pray the pieces will fall into place. We all have a purpose, and I knew mine, now I have to find out what the next purpose is. I am not defined by my disease, but people ask and I share and then they disappear and that’s ok, it doesn’t really bother me any more. I am still Kelly and I still have the same heart and values and morals and likes and dislikes, I just have to live differently. Sometimes that’s where my stubbornness comes into play, I want the old Kelly back, She loved what she did and was good at it and I truly loved going to work every day. We all have our own challenges and have been given some gifts with our illnesses? Yes I mean that, I believe it has taught me, we only live once, you can’t settle for what is just comfortable, patience, helping others, caring for others, no judgements.
I also think as we age, we are meant to have cross roads in our life, or our life would be stagnant, we wouldn’t learn from others or about anything else. You get comfortable in those shoes you were living and it hard to step out of them. I believe the same to be true even if your not sick, you can be heading down one road and here comes either the stop sign or the y in the road, you may fail at something new, but you tried, you may succeed but its still doesn’t hit your core, that this is meant for me. I think by practice and error you find your passion, I remember I read a book on this topic and it said when your little, you play what your heart desires, whether that be a teacher, a mom, a ceo of a company, warehouse worker, I knew from when I was a little girl I wanted to be a mom no matter what, I wanted six kids, that didn’t happen. I didn’t expect to be a single mom raising two boys but I did it. I loved playing house, I still love to fix up my house when I can, I didn’t want to be a banker, hated math, I loved Barbie’s, but my doll house was my thing, it was a family, so for me that represented as a adult why I was the mother that I was and still am today, It was in my core. Helping others, I use to visit the widows in the neighborhood and visit because I thought they needed a friend, I still to this day like to help people in what ever way I can. So now I can help people with invisible illnesses, my life doesn’t have to end or my purpose, just find another way to use it.
But for the generation coming up behind us, I think some kids are lost, outside influences confuse them on their morals, values and their purpose, there so busy with electronics they never found their passion, so when its time to move forward they don’t know where to go what to do. Imagination is a wonderful thing our kids don’t have today because they are always entertained, since so many programs removed out of the schools, they don’t know if they want to or are good at playing instruments, or art, ect. So as kids growing up being entertained, how are they suppose to know what they enjoy other than more electronics.
I found journaling to help me find my way out of my cross roads, clears my mind, and journaling the right way, to get to know the real you, taking those tests that tell you what you would be good at, meditation but guided imagery is also a wonderful tool that I love and should be used more often.
So that being said, we were all put here for a purpose, mine was different than my brothers but that creates a balance in the world, if everyone had the same gifts, it would be a boring world. So of the most interesting people I have met are people I wouldn’t expect, total opposites of me but that’s a good thing, If you have 6 kids, each one will have a special gift to bring to the table and you have to listen to your gut and your heart to tell you what that is. Musicians are amazing to me, their talent creativity, but me, my kids cried when I sang to them. A really good sales person has a talent if you buy with out feeling pressure, I would not be a good sales person, I know this to be true, but others are and God Bless them. Some are meant to be Doctors and I would try to soak up any information that they would share, but socially not so much, I love teaching Doctors about my disease. Showing them the research I have done, because they learn something from me. Collections! No way no how, I would by every excuse they had to not pay a bill. So knowing these things, I know at least where my road is not going. Right now my road is my illness and helping who I can along the way.
So If you take one thing out of this post today, You are a gift, you are enough, you have a purpose, don’t give up, live your passion! Don’t let outside influences tell you differently because if your not living authentically and with your passions, you live your life with a empty heart.
The Good News
The Good News: Cushing’s Awareness
The good news is that April is Cushing’s Awareness month! Awareness means getting attention and sending a message. It means getting people to talk about the diagnosis including the symptoms and what the diagnosed experiences day to day. It could be the answer for someone still searching for a diagnosis. Cushing’s disease is still a lesser known illness and awareness is important for increasing the funding, research, and understanding that is desperately needed. With understanding, others may not be as quick to judge because of lack of knowledge. It can help those struggling to get more support from the people around them, as their symptoms and experiences are reinforced and validated.
Awareness campaigns have an impact on doctors too! They are a reminder to consider lesser studied illnesses when diagnosing. Many people who have fought for their diagnoses end up not trusting doctors because of conclusions for symptoms that blame the patients like: “you must be eating too many calories and not exercising enough” or “it’s all in your head”. People have also lost faith in some mental health professionals who have erroneously agreed with physicians that the symptoms are psychological in nature. Feeling invalidated, neglected, and judged by the professionals that are supposed to be helping us while having a chronic illness is difficult enough; it adds to disempowerment.
The good news is that there are ways you can empower yourself in the midst of living with a chronic illness. First, it’s important to self-advocate. The Wellness Recovery Action Plan (WRAP) identifies these ten steps to being an effective self-advocate:
Believe in yourself.
Know your rights.
Decide what you want.
Get the facts.
Express yourself clearly.
Assert yourself calmly.
Be firm and persistent.
An approach that encompasses these ideals can help you with being heard by physicians and mental health professionals (and loved ones). Doctor shopping is empowering. Think of your doctors as consultants. Find physicians willing to be part of a team of doctors within a variety of specialties to get you the best care possible.
Self-advocating doesn’t mean that you have to do it all on your own. A strong support network really does help. It may be difficult, but it is important to weed out people in your inner circle who are not supportive. The last thing you need is to spend more time trying to convince someone that your symptoms are real. How many times is it reasonable for someone to ask, “What is ____ (Cushing’s disease) again”? Allow yourself to accept the assistance of people who are supportive. Ask trusted individuals to attend doctor’s appointments with you. They may think of questions to ask that you did not. They may have an example of a time they witnessed one of your symptoms and help to continue to validate your experience. They can help you remember details of the conversation with the doctor that you may have forgotten because of the level of stress that was experienced during the appointment. You can even ask them to take notes so that you can concentrate. You may even want to ask them to drive for one less stressor.
For more information, please go to www.epictogether.org/