Never Give UP On Yourself!

Quick note before getting into this! This is NOT my story! I’m very excited to finally be able to share someone else’s story on how they have learned to “surf the life storm” they are facing! This is Stephanie’s story on how she had to believe in herself and keep going to finally get answers to her mystery health issues……..

No one is going to fight my fight for me! When you know something isn’t right, Don’t let anyone stop you from getting the answers you need!

When I was born I had some sicknesses and was hospitalized a handful of times and could’ve died, but I made it through them. I don’t know how I made it this far in life. As a child I had a pretty normal childhood, I had a serious case of chickenpox when I was five. By the age of 7, I started getting headaches and tummy aches. Other then that, I played with friends, went to parties and was excited about life to come! I thought about what my wedding day would be like. What my children would look like, heck even what my husband would look and be like! I dreamt about the happy successful life I would have with my beautiful family. I thought about what I would be when I grew up, it was between being a teacher, hair stylist, or nurse. I wanted a career in helping others feel better, help them figure out their health problems, but I couldn’t make myself feel better and get through my day without pain.

By the time I graduated high school, the stomach aches, headaches started to get really bad and my knees hurt very bad. I decided to be a hairstylist and graduated from cosmetology school. After work everyday I’d have to go right to bed because of how bad the headaches and body pains had gotten. I could only wear flats or sneakers because my knees and hips would dislocate out of socket if I wore heels. Oh man, do I love heels! Once in my twenties, my hips/lower back and shoulder would all hurt so bad I couldn’t keep my job standing all day working as a hairstylist. This absolutely devastated me. I loved coloring and cutting peoples hair.

I tried taking care of the mentally disabled for 3 years but sadly lost that job because I had to help them with their daily tasks and I was having so much trouble doing my own daily tasks. During that time I tried finding out what was going on through my PC, and every specialist appointment I could get to try and get answers. I just wanted to live a normal life! As the years went on I just got worse. My body was slowly breaking down and I had no diagnosis to explain why. Every time I went to a new Doctor I got more upset and didn’t want to continue. So many times I wanted to give up. My family stopped supporting me and believed the doctors. “It was all in my head, I was lazy and didn’t want to work or have responsibilities. Up to the age of 38, I would leave every doctors apt crying with no help and feeling more hopeless then the last apt.

When I was 27 I had my first child, my beautiful, strong, Independent daughter! At 30 I had my wonderful, handsome, fun loving son and I’m so thankful to have the two of them. Without them I don’t know if I’d still be here today. My support was getting smaller and smaller after going to doctors for years and not getting answers. How could the doctors not figure out why my body was breaking down? How could I feel this bad and not be able to prove it to anyone in my life. I lost trust in people and lost my faith and wasn’t sure what to do. I knew something wasn’t right. They have to figure it out! Not just for my sake but for my children. They were my biggest cheerleaders. No matter how upset I’d be when I got home from the doctors, they kept me going. I wasn’t giving up! I was going to prove all the naysayers in my life I was telling the truth.

Once back in my twenties I had gone to a specialist who had sent me for mris and xrays. The test always came back fine besides normal wear and tear but she knew something wasn’t right. She was a specialist and couldn’t help me anymore and sent me back to my P.C. I was upset but understood. I did physical therapy on every body part I could. I pushed myself to stay active and be the best mom I could be. So 15 years go by and still no answers as why I was getting worse. So I decided to write down every single symptom and all I was going through and go back to that specialist who believed me. I ended up sitting with her and going over everything. She told me that she had another patient who went through a lot of the same stuff and that he went to a genetics specialist and I should try that! So I made the appointment!

I was nervous and didn’t have much faith in this visit. I figured it would be like all my past apts and specialists. He asked me why I was sent to him. I told him it was just my doctors intuition to try! He seemed a little stand offish at first and I could feel the tension in the room. I explained how I felt since I was a child. He ended up asking like 300 medical history questions and then did an exam of me. He told me the doctors intuition was right, I had 7 out of 9 markers for Ehlers Danlos Syndrome. He did a blood test to verify that I had the connective tissue disorder. I couldn’t believe it as I walked out of the appointment finally knowing what it was I was born with and nothing that I did gave this to me. It was the worse and best day of my life. It wasn’t in my head! I was vindicated. I couldn’t wait to tell everyone who supported me, and even more the people who didn’t believe me! I walked back into my Pc’s office with my head held high to tell her. Now I have never heard of this disorder before, I told her and she tells me “oh yeah, I have a few patients with that.” I almost fell off the exam table.

So it has been 2 years since I have finally found out about my disorder. I have had hip surgery, and am going to end up having surgery on both my knees. It’s funny after all the years of the doctors telling me the small things they found wrong, shouldn’t bother me the way I said they were. Now I will need surgery on multiple joints. I am thankful everyday that I finally know what’s wrong with me. Now I just have to learn to live with it. Some days are definitely harder then others. I’m so glad I continued to fight my fight and never gave up, no matter how many times I wanted too. Until next time! DON’T GIVE UP! CONTINUE TO FIGHT YOUR FIGHT, BECAUSE NO ONE IS GOING TO DO IT FOR YOU!!

-Stephanie

Share on Facebook

Tweet

Follow us

Save