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/
This site crossed my paths and I knew it was one to be shared, I already have purchased two shirts to help support this site, it’s real, its helpful and fits in with my page, I just love the energy these women Cassidy and Savannah have and I am sure you will love there site, check it out, tell your story and lets help get the word out about Invisible Illnesses and rare diseases. There are more out there than you know, knowledge is the key, awareness is the cure and support gives us the want to continue to fight. Check it out.
Of Mindful Manner was born out of a need to better represent the individuals of the world who show no outward signs of their illness. Coping with an invisible illness can be frustrating and painful, but these issues are compounded by a lack of knowledge and understanding. Our reason for being is to help enlighten and encourage our friends, families, neighbors, and co-workers to address individuals with empathy and understanding. At Of Mindful Manner we know that what you see is not always what you get, and because of that, each garment is carefully curated to serve as an invitation for conversation. The more conversation that surrounds invisible illness, the less room there is for stigmas, ignorance and misunderstanding.
We want you to know that we see you and we recognize the battle you are facing. There is a whole community at Of Mindful Manner that supports you.
Hello, Cassidy & Savannah here! We are so thrilled you have found your way to our shop. We are sisters who have had our lives tremendously impacted by invisible illness. One of us has Dysautonomia and Chronic Migraines. The other one of us has grown up with a front row seat to living with these conditions, and has shared in the burdens they can cause. That’s the thing about invisible illnesses though.. you can’t tell by looking at us, which one of us fits which description.
We know our story is not unique. Nearly half of the U.S. population lives with some sort of chronic illness and 96% of chronic conditions are invisible. So while you may not suffer from an invisible illness yourself, chances are you know one or several family members/friends or co-workers that do. We pray the future holds cures for everyone, but in the meantime we will dedicate our lives to spreading awareness in hopes of making this world a more mindful one.
Search Returns Shipping Contact Us Blog. WWW.ofmindfulmanner, link located on the left hand side of page, bring ya right to it. Kelly
Weight loss although has risks, can be a benefits including curing diabetes, lowering blood pressure, lowering cholesterol, easy joints and arthritis pain, digestive issues. Asthma and lung disease, sleep apnea, pre diabetes, Hepatic Steatosis, non alcohol related cirrhosis, PCOS for infertility, Joint disease, pseudotumor cerebri, uniary incontinense, venous stasis disease which causes swelling and varicose veins, Depression and mental illness, Quality of life. Longer life.
The Lap Band, adjustable Banding System. Placement of a flexible silicone band around the upper part of the stomach. the result is your not as hungry, feels fuller faster and eats less. there is a port left under the skin, so the Doctor can tighten the band or make it looser.
LRYGB, Laparoscopic Roux-en-Y gastric Bypass, t in involves the creation of a small capacity stomach pouch and a small outlet from the pouch directly into the small intestine, where nutrients are absorbed. The pouch will hold less then the previous stomach, can fee satisfied sooner, eats, Hormonal issues make a difference in your calories being burned.
LSG, Laparoscopic sleeve gastrectomy, This removes a large portion of the stomach, the remaining portion of the stomach is formed into a long tube that is unable to enlarge or balloon up with food. The restriction reduces the amount a person can eat and causes satiety with less food.
MGB, Mini-Gastric Bypass or loop Gastric Bypass is a laparoscopic gastric bypass the involves connecting a loop of the small intestine to a small stomach ouch, creating the same sense of satiety and reduced hunger This procedure tissue connection instead of two and can be performed out patient.
The Duodenal Switch, This procedure involves a more complex re-routing of the intestines, that results in reduced stomach capacity and reduced nutrient absorption, It is the most invasive of the procedures and has the most risks but it may still have a role as a revisional procedure of for people with severe diabetes and very high BM!.
Band with imbringcation, This procedure which adds an imbrication or surgical in -folding and tightening of the stomach, to the placement of any adjustable gastric band. this is also out patient procedure it may improve weight loss produce faster results over LAGB Alone.
The laparoscopic improvement allow surgeons to spend less time in operating room and usually can go home that day.
In order the Qualify you must have a approval from a bariatric surgeon, the surgery center, BMI over 55. No history of Pulmonary hypertension, anesthia approval, sleep apnea under control
If you are over 65 most likely you won’t qualify.
You may want to keep your decision to have bariatric surgery to your self, the last thing you need is others opinions, it just between you and your Dr. You can even go under another name in the hospital to protect your privacy, but if you want to share your decision, make sure its with positive people that will support you in your journey and help you in your recovery.
A fantastic Book to read which gives you the in’s and outs, pro’s and con’s to any Gastric surgery. It is called A Sasse Guide, Outpatient Weight loss surgery, Dr Sasse is a highly experienced and accomplished bariatric surgeon, author expert and featured speaker national in the field of Weight reduction, bariatric medicine, remission of diabetes and surgery.
I have met him personally and just felt comfortable with his knowledge, He has refused patients because they don’t qualify, which I think is good, instead of just making the money. His office staff is incredible, kind and not judgmental. You can order the book off Amazon.com
If you would like to contact his office for their information conferences or a consultation the phone number is 775-7999. He resides in Reno, NV
IVIG therapy also known as a normal human immunoglobulin, the use of a mixture of antibodies to treat a number of health conditions. This treatment can treatment many diseases such as mine autonomic neuropathy, autonomic small cell neuropathy, autonomic dysfunction but is used for so many other treatments and everyone has their own idea of what the treatment is like I can only explain how it makes me feel. Everyone’s experience is different. I was told you may be cold, or fluish, fatigue and painful joints.
My particular treatment plan is 5 days on and 3 weeks off. I was ready to go, positive thinking, I am not going to have any site effects, I am thinking positive. So it can be done by injection or IV. Mine is IV. One particular thing we noticed The faster the IV the more sick I felt, so a 2-3 hour treatment turned into 5 hours. This is done in a infusion center. and all around you are cancer patients, infectious disease all receiving some sort of treatment. That alone makes the entire situation more surreal. Other than the poke in the vein, it was nothing, I had planned on writing reading, but a part me needed to watch, learn and listen to what was happening, not out of disrespect for other patients but one reality of what I was enduring and 2 how lucky I was I was alive, tears for the people that were so sick, its really a difficult place to say Yeah I get to go to treatment today. So I dressed up, I was raised if you felt bad, dress up and you’ll feel better. I was the only one not in pjs, sweats etc.. I wanted to ward off all evils. I didn’t know what to expect,
The headache began, wow! I had never had a headache like this, took Tylenol, no relief, my legs hurt but that was normal but usually heat helps, not this time. I was nauseated, well I was use to that but I could conquer this, these people are fighting for their life, I can do this, I found myself tired, warn out, barley wanting to make it to the car, but tomorrow was going to be better. I came home no appetite and just slept until the tornado began, it was building and I was doing guided imagery to stop it, wasn’t working, I am getting a warmer and warmer stomach, head felt hot, didn’t even want to watch TV. I had so many things planned that I would get done during treatment.
Day 2 a little worse, Day 3 little worse, still forcing myself t dress up, said screw bringing the computer or writing or reading, I knew now, my fight was just beginning. I kept thinking just 2 more days, then sleep for a month. little did I know the days following made me sicker and sicker, found myself sleeping on the bathroom floor, can’t eat, can’t drink, my taste buds were leaving before the treatment but now gone, I was so sick I spent Christmas in the hospital, I didn’t even care that it was Christmas, my veins were giving out, and find a vein that worked was getting difficult, but I was so use to it, it didn’t hurt, my arms trashed, my hands are trashed so I had to have a port put in. This allows the treatment to have access with out having to stick me 6 times. It put me over the edge. The Doctor said it was normal for people to have this reaction after the first 5 days. Thanks for the information. I start again on the 25th, my taste buds are gone, I’m nauseated to the point the meds don’t work anymore, I will crave something like fruit and I pay after. I always thought food was suppose to be good for you, now its just a necessity to stay alive, I can even hold that down, my chest hurts, my esophagus hurts and burns like its on fire. My smell has changed and sounds, its like effecting every aspect of my life and with out food I have no energy, I guess because my body is loosing wt slowly it doesn’t matter, but when you can’t get out of bed your not going to burn a lot of calories.
So for me I pray my second treatment I will handle better and get through this easier. I have home health to do it at the house because with out a immune system, I can’t be around infectious disease. I feel so blessed, I can be in my pjs and no one will think lesser of me because it will just be me and the nurse. So I know I have along road, but it’s a road worth fighting. sometimes I feel so sick Ipray I don’t wake up, and peoples responses still blow me away, Until you try it, you don’t know how you will feel during and after treatment. so I will pray each treatment gets better and I will start to feel better, my dream to get my life back. I am willing to do anything to live. But IVIG is no picnic. But if you are starting this treatment your reaction may be different, you may have no symptoms, I pray that for you and myself.
Positron Emission Tomography, uses radioactive traces in die that injected and circulated through out your oody and brain to reveal details about the blood flow, glucose, metabolism and more, it works at the cellular level, for a great view of seizures and memory disorders and to tract the progression/regression of cancer over time.
EEG: Electroencephalography monitors the brain’s electrical activity through electrodes on and occasionally in the scalp. It’s high temporal resolution, great for diagnosis in Epilepsy, sleep disorders or whether or not some one is in a coma.
MRI: Functional Magnetic Resonance imaging, monitors brain activity due to changes in blood oxygenation, useful for mapping which brain region are activated in the course of various activities. but th e
CT Computed Tomography: x Rays and digital processing to create 3-D images by stacking cross-section views. Its low resolution is powerful enough to detect tumor itself create
Well the time has come for my treatment, I am blessed it’s all coming together, but never the less scary, a friend just reminded me not to be the victim but the fighter, so that is who I have to be. My treatment protocol is coming from Washington research institute, and national institution of health and Stanford. I.will be receiving ivig treatments that go between 3_4 hours per visit
My scheduleis 5 days on 5 days off. If i can tolerate the treatment, they will be surgically putting in a port, so i dont have to destroy my already calcified veins. Then we are back on 5 and off 5. There are risks but I have to say I am not getting them. Ihe first week will be the hardest , we are trying to get the home health to come do it at my home wich is 100 percent covered and keep me out of areas where people are being treated for infectious disease. That’s the goal. I was not aware this treatment will continue for a year if not longer. I will.have regular blood work and biopsys to see if the treatment is working. Each vial is $6,000.00 so making sure it working is important information and will be done at Stanford. Although this day should have been done years ago, the technology wasn’t there and reno can’t even perform my biopsys. Seriously!!!stanford does not trust the equipment or Doctors in reno because for one they do a echocardiogram and told my MVP has healed and My heart was fine, only to find out my MVP is worse and I had a heart attack and surgery done there. The simple step of turning the loop recorder down so it can read your hearts activity is pretty embarrassing, mind you the Dr did it with out any surgical attire in a Operating Room and had to be reminded by the tech he had no sterile clothing on. So many stories like that. I simply can not believe a Doctor in Reno can not do skin biopsy’s. 2017 why will no one do them, Every Dr said they can’t be done in Reno. My trust level has diminished in this town and the 49 Doctors that mis diagnosed me, but no one was willing to look outside the box, they choose to not keep up on the latest papers, journals ect. There a few good ones left in town but soon to retire, the only gynecologist my insurance covers, I wouldn’t take my guinea pig to. But there are a lot of new Doctors in town, one is my Electrophysiologist, He’s suppose to be like the best in the US, a little odd but I don’t Care, Dr Ogara, Dr Fairmond, Dr West, Dr Backman, but again none of them are treating me, it is going through Stanford and that is fine with me. One thing I have noticed about the new generation of Doctors coming into Reno, Is a lot of Indian decent and so kind, smart, empathy, and truly in medicine for the right reason, So Reno hopefully will be changing. So there r two things I’m asking any of my close friends, I might need help time to time or someone to come just sit with me, I’m also asking that please donate blood, blood is used and things removed that cure others, not just today, but on a regular basis, since I am the guinea pig for this I pray it not only works but can help all the other people that aren’t even being tested for this antibody, but I had a Dr at Stanford that went beyond the call of duty in researching who was researching my first disease the autonomic dysfunction didn’t just land off mars and pick me, I carried the antibody that causes it. So that being said I have volunteered to be part of the research team, I’m not going through just for me but the people diagnosed behind me, so I wanted to give you a update and to tell you how its going.