Yvette shares her #MyositisLIFE, “Imagine That!,” a glimpse into being perfectly healthy and then becoming disabled in the blink of an eye for Myositis Awareness Month and MSU’s #MyositisLIFE project.
Imagine waking up one morning (November 2015) with your hands swollen, and a rash on your fingers that hurts to no end. Imagine your hands being so swollen that you’re unable to dress yourself. Imagine not being able to turn the knob on a door, open a bottle of water or even tie your own shoe. Yesterday you were perfectly fine. Imagine that. Imagine calling the doctor’s office and you can’t get an appointment until January 15, 2016.
Now imagine in the meantime that you’re just not feeling like yourself and now you have this hacking cough. Imagine going to urgent care and being told you have a upper respiratory infection “here’s a prescription for an inhaler, cough pearls, and cough syrup one of these should help you.” As far as that rash on your hands…..yeah about that…
Image it’s now December 2015 and you’re still not feeling like yourself. You get tired easily and that rash, that painful no-one knows where it came from rash. Imagine that your hands are so swollen that at this point you have to cut your ring off.
Imagine it’s finally January 15, 2016, you go to the doctor with a level of expectation being, she’s the doctor and she’s going to get to you fixed up and you’re going to be back to “normal”. Imagine the doctor look at your hands hearing your symptoms and she’s looking just as puzzled as you are. At one point during the exam she mentions that it” MIGHT be LUPUS”…… Let the blood tests begin!!! Now imagine while you’re waiting for the results of the blood test she prescribe 5 days of 20mg prednisone. (O MY RELIEF) Imagine you now have relief but no resolution, meaning the pain was gone but the rash was still there. Now imagine calling the doctor’s office to inform her of this at the end of the 5 days. She then prescribed 5 more days of 20mg prednisone. Now imagine it’s February 5, 2016 and you’re back in the doctor’s office for an follow up appointment. The results are back. All negative. No diagnosis or prognosis….imagine that….
Imagine the pain and the rash has returned, the doctor does more blood test, and prescribe prednisone, 3-20mg pills for 5 days, and then start a tapper, 2-20 mg for 5 days, 1-20 mg pill for 5 days and 1/2 pill 10 mg for 5 days. A total of 20 days on steroids. (You’re feeling good now)….
Now about that rash. Imagine today is March 2,2016 and you finally have an appointment with the dermatologist and you think to yourself now we’re going to get to the bottom of this, but imagine while you’re waiting for your name to be called you start to cough, cough and cough (remember you’ve been off the steroids for 6 days the symptoms are returning) I mean the cough won’t stop. Imagine your name is finally called and you and your cough go to the back with once again a high level of expectation. Imagine the doctor taking a look at your hand and write a prescription for clobetasol. How or why you have the rash…at this point it’s still not clear to him or you…..Now imagine asking “What if this doesn’t help. ” If it doesn’t help come back in 2 months”…..(oookay)
Imagine going home and now the cough is getting more intense. You’re starting to become short of breath. Imagine trying to get dressed and it takes an extra 30 to 40 minutes because you have to stop and rest. You’re just not feeling like yourself.
Imagine today is Thursday March 10, 2016 and the cough has gotten worse and now your breathing is getting worse. You think to yourself if I could get rid of this bothersome cough my breathing would get back to normal. Now imagine waking up on Friday March 11,2016 and you just feel too bad to get up and go to work. You stay home in bed and you think to yourself, Monday I should be fine. Over the weekend you self medicate. You get cough syrup because after all the cough is the issue….isn’t it?? Now that did the trick it suppressed to cough and you’re able to sleep….( ON THE ROAD TO RECOVERY NOW) Imagine waking up at 1 o’clock in the morning late Sunday night early Monday morning whichever you prefer you wake up feeling like you’re breathing through a straw. (OMG!!) You’re struggling to catch your next breath because you made the attempt to go from your bed to the bathroom, which is all of 10 feet. (OMG)
Imagine calling your daughter she picks up on the first ring because she knows you haven’t been feeling well. When she answers you squeak out I can’t breathe I need to get to the ER. Imagine she lives about 12 minutes away she get to you in 7. Your daughter decide to take you to a different hospital because clearly the one you’ve been going to hasn’t been much help. On the ride to the ER all the windows are down and your head is out the window, and you are struggling for that next breath you and your daughter start to pray.
Imagine making it to the ER they take you right back cause clearly you’re in distress. They put oxygen on you, and turn it up to 8 liters. You can breathe. (Thank You Lawd) Now let the tests begin AGAIN. Of course they do a chest x-ray. They come back with a quick diagnosis, it’s DOUBLE PNEUMONIA……Imagine that.
Imagine being admitted into the hospital being put in critical care. They start the antibiotics. Imagine the antibiotics that they are giving you from March 14th to March 16th aren’t working on March 17th they start stronger antibiotics.
Imagine on March 18th they do a bronchoscopy, and you get really sick after the procedure your temp goes to 104 and they put you back in critical care. Imagine it’s March 21st and they take you out of critical care and put you back on the main floor. Imagine on March 22nd the doctors come in and talk with you and tell you, you might be going home in a few day. (Understand that you are still on oxygen 6 liters just to get up and go to the washroom you are still struggling to catch that next breath). Imagine on March 24th they do another chest x-ray. The x-rays look worse now than they did when you came in. Imagine you have now been in this hospital for 11 days, you’re getting worse, over 36 different test on you to try to get a diagnosis. Everything is coming back negative. Imagine that……the doctors seem more concerned about the rash on your hand rather than the fact that you can’t breath. Every doctor or should I say team of doctors that came in wanted to see the rash….(Strange)
On March 25th the doctors come in and tell you they can’t figure out what’s wrong with you and they are going to transfer you to another hospital. Imagine later that evening you’re in an ambulance headed to the third hospital since this situation started. Imagine that you get to the third hospital and the blood test begin yet again. Imagine on March 28th they do a lung biopsy on you. On March 28th they start you on steroids 20 mg. On March 29th they give you 2 steroid pills. Now you have to imagine during the whole time they are still doing blood test and you still don’t have a diagnosis. Doctors come in at one point during all this testing tell you what they “THINK IT MIGHT BE” but it’s going to take about few weeks for the test results to come back and they are still asking about the rash. IMAGINE THAT!!!
Imagine that on March 31st they give you what’s call a steroid burst 500mg in an IV. You get another one on April 1st. On April 2nd & 3rd they give me 1gm of steroids, on April 4th you’re finally discharged, BUT you have to go home on oxygen and you are still struggling to breathe. On April 11th you have a doctors appointment, FINALLY an official diagnosis was given to you. You have MDA5 Dermatomyositis. Let the questions being…How did this happen? Where did I get this? What do I do now? Is there a cure? Will I always be sick? This is a autoimmune disease so there is no cause or cure only a treatment. This particular autoimmune disease inflames your lungs (hence the not being able to breathe and the incurable cough) it can also cause the joint inflammation (hence the swollen fingers) and it also creates rashes on the hands that in your case only appear on the finger tips. The doctors give very little information on what to do at this point other than a medication change and tell you to give it time. More tests are being ordered to look at your lungs and you will have follow up visits to check progress. However no step by step instructions on what to do in the event certain symptoms appear such as the skin on your hands becomes so thin they begin to open and ulcerate. IMAGINE THAT!! If you currently have this issue try keeping the area dry. It helped me. I’m currently being tapered off the steroids from 60mg a day currently at 20 mg. I’m also taking cellcept 2,000 mg a day. There is so little information about this disease as you can see from my timeline I went from November 2015 to April 2016 before I was diagnosed. I just thought I would share a little of my story with you and let you know that you are not alone.
Imagine That: The Mental
Imagine that in your mind you’re thinking you have never had a day of illness in your life, outside of a cold or a headache you haven’t had any health issues. You’re young (47). You go get your yearly physicals. Why is this happening? And in 22 days you go from being independent to dependent. You are now chain to an oxygen machine. You are now disabled. Imagine every time you leave the house you are dragging an oxygen tank behind you. IMAGINE THAT!!!!! Now imagine you only daughter is about to give birth to her first child, and you won’t be able to be there. Yeah go ahead and imagine that!
During your stay in the hospital, this is the second day that you’re there you have to keep in mind that you’re not being properly treated, the doctors “THINK” you have pneumonia and you don’t so the treatment isn’t effective and you’re not getting any relief. You start to cough and you’re coughing to the point that you start throwing up sputum. Your lungs are so filled with fluid and inflamed you are struggling literally to catch your next breath, your daughter is there at your bedside holding the sputum tray, holding your hair, and whispering in your ear just as calm as ever, “It’s okay Mama just keep breathing, I just need you need you to breathe.” Imagine thinking while this is going on…you’re going to die, you can’t breathe.
Imagine that you get through the worse 15-20 minutes of your life. You look at your daughter and you wonder what she’s thinking. She has just gotten married , she’s currently 7 months pregnant and has been thrown into the role of caregiver. She has a house, job, bills, and a husband now Mama is sick. And they don’t know what’s wrong with her.
Imagine that not one time do she ever voice any concerns other than a concern for you. Stayed at the hospital day and night, and when you were discharged moved back home and said “I’ll be here until you come off the oxygen”. And you are so grateful to GOD that you have a daughter like her. Imagine that…..
Imagine that you can’t even take a shower on you own you need someone to help you and you have to sit on a shower chair. (It’s a crumbling and humbling experience). You need someone to prepare your meals you’re on oxygen. You need someone to wash your clothes because you can’t walk down the stairs to the basement. You need someone to take you to and from your doctors appointments and you sit and think why is this happening to me? You sit in your room and listen to the loud oxygen machine running and you think will my life ever be the same again?
Imagine that the people that you thought should have been there for you in the most difficult time in your life wasn’t and you play that slow sad tune of Bobby Womack in your head over and over (Nobody wants you when you’re down and out). You just feel helpless. IMAGINE THAT!!!!
Imagine That: The Spiritual
Now Imagine that once you have your I’m feeling sorry for myself moment in the day, you don’t let that affect the rest of your day. And you turn to your faith.( A faith that hasn’t be tested can’t be trusted). You KNOW that GOD is alive and well. You know that GOD is a healer. You Know that millions didn’t make it but you’re one of the ones that did. You know that he has kept you through this whole ordeal. You know that the prognosis is good. You know that GOD is a keeper, he’s loyal and just to his word. And you believe in the power of prayer……. go ahead and Imagine that!
Tags: myositis awareness myositis support