Patient Information

March 2015 036


Our members would like to share some words of experience with those who are newly diagnosed….


Mary:   I own it. It does not own me!!!!! Tell myself that every day.


Dara:   It is litterally impossible for a healthy person to understand what we deal with every day. Just like I can’t relate to a parent because I don’t have any children. It’s just not possible, Ive learned to accept that and not get so irritated over someone’s ignorance.


Jess :   Doctors don’t know everything, and some doctors know more than others. Read up, talk to other folks with MCTD, don’t be afraid to ask questions and make suggestions on your own treatment. And if what they’re doing for you isn’t working don’t suffer silently. The squeaky wheel gets the grease. If there are options for rheumatologists, don’t be afraid to get a second opinion or even switch. Doctors are not gods, and you know what’s best for your body.


Michelle:   We are stronger than we sometimes realize we are. What we think and what we tell ourselves are very powerful. Learn to tame your tongues and minds toward the positive.  And forgive yourself! It is OK to have limits!


Gini:   Make sure you make the doctors listen to you.!!!!!!


Kerry :  Keep moving….and try to stay positive about life in general.


Julie:   Keep searching for info! Even though you can’t find answers, keep looking! Doctors can’t tell you all that may happen. Try to learn all that you can. Try your very best, not to let it depress you. Life still happens.


Julie:   Food, stress levels and sleep are just as important to managing this disease as the meds. Also, make focusing on the positives a habit


Christina:   Learn to go with the flow. Stop to smell the roses and find enjoyment in the littlest of things.


Michelle:  Don’t back down, don’t give up, be your own advocate!


Jane :   We are here for you, you are not alone


Ja-Ja :  Give yourself permission to not be perfect!! Don’t try to use up your good days thinking your house has to be spotless n trying to get housework caught up, use them to make memories with friends and family that sustain. Do not give in to the urge to please everyone trying to make up for your disease and become comfortable making NO a part of your vocabulary and real friends and loved one’s will accept rain checks, too. Stress makes you flare and those drama queens n needy friends will be the first to disappear so cut them from your life for your own health and focus on those you know will be there.


Danni:  Eat well, rest often, exercises as much as you can and keep yourself updated with as much info as you can!!! Stay Strong xxx


Denise:  Stay positive and you’re never alone.


Monica: Take it a day at a time.  Smile


Katie:  chronic illness has many gifts such as a whole new outlook on life; learning to live in the moment and to treasure time you get to spend with loved ones and friends.


Samantha:  Learn to appreciate the good days, and accept the not so good days as they come. Some days your the boss of this thing, some days it’s the boss of you.


Stacie: Do not listen to Dr. Google.


Janelle:  Listen to your body. If it needs to rest, then do. You will feel better by paying attention to its signals


Henriette:  To focus on what you can do, instead of what you can’t.


Heather :  Do not compare yourself to healthy people. Listen to your body and take care of yourself.


Kristin:   Eat healthy, take your vitamins and fish oils, get some sleep and exercise. These things, I believe, have been the key to my remission.


Patricia:  Mind what you eat, in can make a hell of a lot of a difference. Especially when it comes to fat. Concentrate on the veggie stuff and see what happens … be ready for a big surprise. If this doesn’t happen, experiment until things improve. Make sure you get all the essential nutrients though.


Kathy:   Beautiful advice , I can read this over and over. This would make a wonderful  book  .


Kimarie:  Do not allow yourself to give into the pain and fatigue that consumes you. Stay strong, keep moving, eat healthy, and keep fighting.


Martin:  1. Accept that this thing is bigger than you and that you cannot fight it head on. 2. Think of your energy as money. Spend only half of what you thing you have, and invest the rest in your recovery.


Martin:  and always carry Chocolate.


Paula:  Educate yourself. Get all the valid info you can about this crazy disease. Stay positive—always.


Becky:  Trust in Jesus


Julia:  Find a new Dr if the one you have isn’t helping. Exercise and eat right, makes a big difference.


Stanza:  Be kind to yourself, allow time for grieving and then go forward as best you can.


Cat:  No matter what you think about your diagnosis, current medical state or medications.. it can and will change with or without notice and may do this many times.. .So don’t concentrate on the illness… concentrate on a hobby or two or three


Jo:  It is not all in your head. You are not a hypochondriac. This disease is very real. When you know something inside you just isn’t right, fight til you get a good doctor who will take you seriously.


Jennifer:  Learn how to say “No” if you haven’t already.


Jane:   Pace yourself, don’t overdo things, listen to your body. Get a good specialist you can trust and don’t have people in your life who bring negative energy . Try to go with the flow…x


Jennifer:  Take one day at a time. Have to put yourself first. Dont let people around you upset you about what you can & cant do. Most dont understand what ur going through. Enjoy the good days.


Cyndy:  Be patient with yourself.


Christine:  Be patient with the people who expect more from you than you can give. Don’t let them make you feel bad that you can’t


Amber:   If something doesn’t feel right or you don’t feel well keep pushing the doc to listen to you…it took me years to find a good doc and when I finally did he diagnosed me and became an advocate for me…but I spent to much time worrying that I was crazy and not enough time trying to be heard. You aren’t crazy…write it down and don’t worry about asking…or fearing what they will think…also I so agree be patient with yourself if you need to rest then do it…its ok…I so struggle with trying to do the next thing and comparing myself to others and all that I just am unable to do…


Darilyn:  Be vigilant about your health. Keep in mind that not everything that goes on with your body is about your MCTD.  You cannot merely assume that a new symptom is related and put off sound medical care.  Any change in your condition or any new symptom that persists needs to be evaluated by your physician.  We run the same risks for cancer, diabetes and sleep apnea as the next person so don’t stick your head in the sand and ignore symptoms of everyday health issues that could arise.


Joyce:   Learn to ask for help from others, you might both end up enjoying the experience! My husband and I laugh like crazy when he helps put my boots on or off! Makes the beginning and end of the day easier!


Jess  ^awwww


Debbie:  You have to be your own advocate.


Maya:  There is nothing wrong with telling people, No.


Tamara:  There are reprieves. When you feel at your worst it wont last, you will have better days. So dont let the bad days make you think your stuck in that doominess forever. Its a disease of ups and downs.


Kerry : Buy clothing with built-in sun protection, and wear it! I got fried on Sunday, in the shade! My shirt from Land’s End saved my arms yesterday while driving…the things really work and it appears sun sensitivity can turn on a dime…ugh.


Bridget:  Sleep….recognizing fatigue is paramount! Prayers!


Gini :  One thing that I have learned is that there are going to be times when you are consumed by your pain and circumstances and you’ll get mad and angry and you will cry and get depressed and you’ll even get mean but we are in a fight for our lives and my advice would to be fight on continue to fight despite what tries to consume you and what your circumstances are we are here for a reason and God is with us so get mad get angry let your feelings show you have a right but never let them steal your life.


March 2015