Today I am here in the Emergency Room because of some side affects from all the IV Treatments I’ve been on over the last few weeks. Which is nothing compared to what I have been through. And this my friends is the reason why I have been MIA lately…
As my brand has become more personal this year I feel like I need to share my story as it is now part of my new life but also to help spread awareness about NMO and use my voice to help others out there get the courage to speak up and be heard regarding their own health issues.
You may or may not know this but I have an autoimmune disease called Neuromyelitis Optica aka NMO*. It is an extremely rare disease. As in there are only 4,000 cases in the US. It is in many cases misdiagnosed as having Multiple Sclerosis like I was originally diagnosed with in August 2016. And do not have MS as of today.
Since August I have had 12 MRI’s. Two Spinal Taps. Hundreds of viles of blood given for labs as well as 8 hours of brain and nerve testing along with many other tests and procedures and have spent hundreds of hours researching diseases, symptoms, side affects, causes and everything in between.
Today I had my eyes tested. And for the first time have good news that I do not have lesions in them! Thank you Jesus! It is so nice to finally hear some good news for once!
I want to share my story and give an update on my health all in one blog so here it is…
As short and sweet as possible!
In August 2016 I had a scheduled Myomectomy Surgery. Removing fibroids that had come back. Three years ago I had two of these surgeries done in Boston. The Surgeons said they could come back in three years and they sure did and ten times bigger! My OBGYN who is incredible said that she was worried with other symptoms I had and needed me to get cleared by a Neurologist before she operated because she had suspicions that I was having a mini stroke or had MS.
I made it my job (literally) to get cleared within 7 days. Results came back and I was diagnosed with MS. I had my surgery and recovered perfectly after 6 weeks time.
After that recovery is when my full time job of finding the correct diagnosis and really saving my life began.
I’ve gone through two Neurologists who unfortunately did not diagnosis and/or treat properly. And I am now with a third team of Neurologists who have diagnosed and treated me properly after my recent 9 day hospital stay! They saved my life and I am forever grateful and lucky to have been in the right place at the right time. No matter who or what you believe in know that someone or something is always looking after you. I am extremely lucky to have had an angel looking down on me on multiple occasions to let me know that my time wasn’t up just yet! I’m a fighter and always will be! I’ve never given up. I had to pull every ounce of energy I had left in me to fight like hell over the last few weeks. It was one thing after the next of constant hurdles I had to jump over. Some days I just wanted to give up. But I powered through every single struggle and battle that came my way. Through laughter, tears, screaming and yelling!
So here is what happened a few weeks ago. I was prescribed a drug for MS by my second Neurologist. I felt in my gut I should not take these injections I was prescribed because I knew I had NMO and you cannot have NMO and MS. So instead my treatment plan to prevent a relapse again was 5 days of IV Steroids. Unfortunately, I have an extremely high tolerance for pain but on the fifth day of treatment something felt wrong and I couldn’t fight it! I felt like I was going to blow up! I felt an unbearable amount of pressure I can’t even put into words. The Nurse came over and took my blood pressure. It was 221. They immediately stopped treatment which was basically done and wheeled me across to Urgent Care. They did 3 EKG’s and labs but had to put me in an ambulance to a hospital closest with a neurology team because that’s all that they could handle there in their location.
That is when my 9 day hospital stay began. I had to go through all of the testing I had just done for the third time the week before which made it my fourth go around. I had 5 treatments of IV IG, 3 more MRI’s, a spinal tap and a two hour procedure for a pic line that didn’t work out. My poor veins could not handle another IV. By my 6th night stay I already had 13 IV’s. And today my arms are still bruised and so sore. It’s insane how much you go through after you leave the hospital. Mentally, physically and emotionally. Nothing else in the world matters but the fact you can breathe in fresh air and see the sun rise and set. So much rest and recoup is needed after the fact because of what my body has been through. It is so hard for me when all I want to do is work and all I can handle is making a meal, washing dishes and doing my short daily walk. After that I need a nap. It’s so hard to listen to my body but I know that if I don’t I will end up back in the hospital for another unwanted stay. It literally never ends. This month is full of follow up doctor appointments to get me on track for my permanent life long treatment which will hopefully prevent any relapse at all. Unfortunately with the IV IG Treatment I just had you don’t know how long it will keep your immune system suppressed. It could be a week or a month so by the end of the month I should know which treatment is next.
When everything is taken away from you and all you have is a hospital bed and your thoughts you start analyzing every single life moment. What matters? Who matters? Where do I go from here? I mean every single thought in your mind is questioned and evaluated and reevaluated. You can seriously make your self go crazy. It was the hardest and most difficult thing I have ever had to deal with but I’ve made it this far to write about it so I am proud of my strength even though I am crying as I type this!
I powered through this little road block and will continue to do so.
I will also continue to use my voice to spread awareness about this disease so that I can hopefully help others with NMO or anyone else in some kind of health situation speak up and be their own advocate.
We only have one life to live and I feel like right now it’s only right to use the platform that I have through social media to help others speak up, be heard and stay strong.
That being said I will be spending more time within the JUST FOR US Community I created on Facebook.
I cannot even tell you how many doctors I have had to give medical information to when it should be the other way around. Just today I’ve schooled four different doctors (in a nice way of course) and given them The Guthy-Jackson Foundation brochure on the disease I keep in my planner to maybe help the next NMO patient that walks through their doors.
If you feel sick you must do your research for yourself and be seen by a medical professional. And if you feel in your gut there is more than what you are being told than you move on to the next doctor and the next doctor until you get your answer! When I finally heard the words. “You were right. You do not have MS” it was like I won a life long court case. It was the biggest sigh of relief. Finally…
At first I was numb and in complete shock and then tears of joy because all of my hard work had paid off. Then it hit me that I actually have NMO and I could be blind and paralyzed overnight. At this point I became scared but knew it was my reality to now tackle with my new team of Neurologists and get the treatment that I desperately needed…
I know that this post was extremely long and I truly appreciate you taking the time to read my story.
Please feel free to share with anyone you know who is going through anything health related as I am here to help spread some happiness through the hell they are most likely going through as I have just been there and back a few times already.
I want to first thank my OBGYN for listening to me over the Summer. If it wasn’t for her who knows where I would be right now.
I also want to thank every Nurse who has helped and cared for me. Without them I don’t think my full sense of humor would still be in tact. Thank you for laughing at my jokes and listening to my stories while on morphine. Thank you for sneaking me snacks in the middle of the night and for letting me use my essential oils and Febreeze and smelling up the entire hospital floor! Thank you for letting me out of my room every day to walk around. Thank you for trying your best to find a vein on an arm in the middle of the night. It’s the little things like this that make a patient feel so much better through a very long hospital stay and make you fantastic and incredible at doing your job! Saying I appreciate you is clearly an understatement.
One thing I want to say is that if you work in the medical field and hate your job it shows. Please find a new job that compassion and manners are not needed. Do what makes you happy! Sick patients just want to be greeted with a simple hello and smile. It’s not too much to ask right?
Lastly, thank you to my new neurology team who tested, retested and tested again and would not let me leave the hospital without answers, confirmation and complete treatment. It’s because of you and your countless hours of research and work that I am writing this today.
Wishing you a wonderful week and I’ll be back soon with a new post!
If you cannot wait until then you can follow me on my Instagram and Facebook pages below.
PS If you are in need of any of my Doctors for yourself here in Las Vegas please email me here and I would be more than happy to send you their names as they are THE BEST!
PPS For more of my story, pictures and videos throughout my hospital stay you may visit my YouCaring page right here…