Living With Sarcoidosis- Cristal
Here is yet another interview based on words from previous conversations with the Sarcoidosis group on Facebook. It is my hope that as people have more and more words you can be more and more empowered as you talk with your medical people. In time we will discover patterns that will be beneficial in both the diagnosis and treatment of sarcoidosis. The interviewer is Carl DeLine, Administrator of the group Sarcoidosis. The interviewee is Cristal Davis.
Hello Cristal, thank you for sharing with us. It is my hope that as we talk it will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having in the the Facebook group called Sarcoidosis. Because this is an open group our discussion will be available for all to see. Thank you again for being willing to share in this venue.
carl How long have you been diagnosed with sarcoidosis?
CRISTAL I was told I had it in 2009.
carl In what ways has sarcoidosis slowed you down?
CRISTAL Sarcoidosis has slowed me down in many ways. Taking steroids caused me to have avn in my hips so its hard for me to walk distance. i get so tired doing anything if its shower day just taking one causes the rest of the day to stop. my line of work i was a cook in big restaurants i cant move like that no more cause sarc causes me to be slow and give out.
carl what is avn?
CRISTAL Vascular necrosis (Avascular necrosis is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone’s eventual collapse.)
carl You have started a group here on line. Tell us the name of that group and what makes that group special.
CRISTAL yes my support group is called Promote Courage for People with Sarcoidosis, what makes my group special is we are a family unit that is there for each other no matter what. I am not only a founder I am on call 24/7 just to bring a smile or to listen cause you are having a bad day. I am for the patient I care with all my heart. This group is here to promote courage to fight another day!
carl Where is home for you?
CRISTAL Augusta Georgia
carl Have you ever lived anywhere else?
CRISTAL Oh yes, I am a military brat!
carl Some people are asking if sarcoidosis may be brought on by the environment. Have you identified any similarities between the members of your group and yourself that reflect issues that may be environmental in nature?
CRISTAL I believe my environment plays a big role in my sarc life especially if i can go outside.
carl How so? Do you see such things as weather, climate, chemical plants, smog etc affecting you?
CRISTAL Here summer I have a lot of ups and downs, it is really hot and the humidity is really bad. Winter I love it, I can breathe because we don’t really have bad ones.
carl I really like the name you have given your group. Can you say more about how you hear people expressing words of courage?
CRISTAL Always I even get like that but we just need to open our hearts and listen and let people know its going to be ok, maybe not tomorrow or next week but we have to build our self up and keep telling ourself that we are strong and because of us one day someone else my not have to suffer. The key is to always know that that we survived the day, tomorrow is tomorrow.
carl Thank you so much for sharing that really important thought- we are here for the next generation of sarc people. The number is increasing so quickly. I believe I heard somewhere there are almost 300,000 people in USA alone with sarc. It takes courage to live with this but also courage to stay in the face of the system.
carl What do you think will be the best help with sarcoidosis?
CRISTAL Well I guess it goes as the old saying goes different strokes for different folks but for me I do what what Drs say to do but I add my own kick, I use a heated blanket for instead of heating pad cause it covers more area for leg pains and instead of laying in bed I get up and try to keep my life as normal as possible.
carl What does normal mean for you?
CRISTAL Normal is trying to maintain everyday life. Sometimes it don’t work out that day. At least you tried and you tried to stay positive, we all know that its hard, it sucks, its painful but even when you think you don’t want to do it no more reach out and talk cause somewhere in that talk you will find something to laugh about in this illness.
carl If you could identify some helpful patterns what would they be and how do they help you?
CRISTAL Patterns are hard, cause to be honest you never know what a moment will bring with this illness!
carl Another question comes to mind. It deals with mental and emotional help. We know you help so many others, how helpful is it to know you have this special purpose in life?
CRISTAL Two years ago I thought there was no way I could go on. I just didn’t want to do it anymore. My life sucked, My health sucked, everything, was never in my mind going to return to normal again. Then I thought about it and I realized that what made me me was helping others and fighting for awareness that brought me out the slump. That purpose helps me a lot, it makes me feel like I did something that even if I can’t do my old life I can at least help others
carl Yessssss! So you also find energy and strength from helping. How many groups are you a part of?
Cristal I am part of a lot but not active. I am very picky, I don’t do drama, we have enough to deal with. I want to be apart of them all but running my own group and making them number one is big. As a founder I think you should be very attentive in your group.
carl What kind of education would you like to see available to sarc people, doctors, family etc. ?
Cristal Patients teaching Drs what it is really like to live a moment in our shoes. Also more things for people with sarc, like resources.
carl What do you mean by resources?
CRISTAL Places like cancer centers have more things to help with the every day fight, something to just help us live a little easier. We fight hard, even getting SSI to fight for us.
CRISTAL I want to see shirts and items in stores, shirts raising awareness,
I want us to let people know this is real we are here, self image building!
Cancer sells in stores, why cant we? … a breast cancer ribbon, shirt, oh its real! why cant there be a purple ribbons, shirts that says sarc awareness?
I want public awareness public knowedlge of us!
carl As I listen to you and others there seems to be something like a curtain hiding this knowledge-it is kind of like the lets make a deal tv show. What is behind curtain # but then a commercial comes and curtain # never gets revealed. Join us next week to find out what is behind curtain #. The schedule changes and next week never comes.
carl powerful feelings
CRISTAL I for one want to change that but how?
carl To re-say the introduction, Thank you for sharing with us. It is my hope that as we talk it will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having. Because this is an open group our discussion, your comments, will be available for all to see.
The interview content from your returned email to me is what will be posted. Do I have your permission to post this interview?* Thank you again.
* Because Facebook claims ownership of everything on their site (with your permission) I will also post this on my personal blogsite. This will guarantee the integrity of the whole interview as approved by you.
Carl DeLine email@example.com