One year ago today I was getting my fifth and last treatment of IV Steroids for my Autoimmune Disease Neuromyelitis Optica aka NMO. The reason why I was getting that treatment was because I denied the other MS Meds my 3rd Neurologist had given me. I needed something asap that would suppress my immune system and hopefully prevent me from becoming blind and/or parlyzed. Steroids were the only option at that time.
Something in my gut told me not to take those drugs. I could not have both MS and NMO which 3 Neurologists had been telling me. I know they were similar but I just had a very strong feeling they were all wrong. I also tested positive for a virus which would have caused a brain infection if I had taken those MS drugs. Thank god I did not as I would not be here today sharing my story.
So one year ago I opted for 3 more MRI’s (#7,8 and 9) of my brain and spine to see if there had been a change. More lesions (tumors) etc. In the meantime I was receiving the 5 days of IV Steroids.
My veins have always been invisible so on the first day it took a while for them to appear. The nurses wrapped my entire arm up so that I would only have to go through that process of poking twice as each IV can stay in for 36 hours. Besides eating for an entire family after each treatment everything went fine. I was crazy wired, sweating like I’ve never sweat before and like I said eating and eating. I knew that was part of the drill though.
Everything changed on the fifth day. Throughout my treatment (about two hours) I felt ok. It wasn’t until the last 10-15 minutes I started swelling up and felt this pressure. A few minutes later it became extremely painful. I called one of the nurses over and she took my blood pressure immediately. It was 264. They stopped the IV Drip immediately. Then a team of nurses came rushing over to me. They put me in a wheel chair and ” ran” me over to the urgent care. Thank god it was right across the hall! They said I may not have made it if it was not there.
Immediaitely I had a team of doctors and nurses surrounding me doing EKG’s, bloodwork and I don’t really remember the rest. That was until they said they were rushing me in an ambulance to the hospital with the closest Neurology team. Thank god it was two blocks away. That ride it still a big blur. I was so scared I think I just blocked it out to be honest.
The next stop was the High Risk Dept. of the ER. From there I began my lovely 9 day hospital stay. And where I met my 4th Neurology Team that saved my life! Which I am forever grateful!
Being in the hospital I had to go through every single piece of testing that I had done in the past year. So now I’m on MRI #10, 11, 12. I also got to have another Spinal Tap! Fun Times. This one though I was so drugged all I remember is the ugly peach paint in the hallway! lol
Throughout my nine day stay I received another treatment that would suppress my immune system called IVIG. Something similar to a blood transfusion. Something you need really good veins for. Long story short. I went through 14 IV’s throughout that stay as well as a 2 hour pic line procedure that did not work. Mostly due to all the steroids I was on.
Here is a funny story about the pic line procedure. They had asked me if I minded if two medical students came to watch and I said sure. Ummm…
There were ten medical students. I was crying hysterically after the blue gown was draped over me and my anxiety was through the roof! When I heard the words “local enesthesia” I should have known…
It ended up being ok because my drugs kicked in right in time and I ended up laughing with all the med students afterwords and thanking them for playing country music to calm me down from one of their phones! lol
Thank god I have a port now! I actually feel better having this then the pic line.
I think it was around my fourth day in the hospital that the Neurology team came in and told me I was right! You have NMO and only NMO! It was like I won a life long court battle trying to save my own life!
The journey of all of this started the Summer of 2015 so you can only imagine how long it really felt. LONG!
After I got discharged from the hospital last year it was then time to come up with a treatment plan. I remained on steroids for months after but was finally taken off of them last Summer! Thank god because they made me craaaazy!
At first Chemo was out of the picture which I was so excited about. However, it reentered over the Summer. In the beginning my treatments were every week, then every month and now twice a year! The last one was in December and then next one will be in June! However, there will be more if I relapse so fingers crossed!
The Chemo I am given suppresses my immune system (preventing a relapse) and that is it. I have to take medication for all of my other symptoms unfortunately.
Ironically, I had taken care of someone with cancer years ago and took her to chemo and watched her go through it. ALL of the ups and downs.
The Chemo I am on is for the rest of my life as there is currently no cure for NMO! I wish I could do a few months and be cured but that is not the case for me.
I looked at chemo as a job. Just like it was for me in the past. That was until I started to really feel the side affects and loosing hair and all of the other painful, emotional and stressful baggage that comes along with it. The day that I couldn’t move one finger in my bed without it feeling like a truck was running over me was the day I finally realized that this shit is actucally happening to ME! This drug is in me and this could kill me!
I’m trying to stay positive here so I am not going to get into all of the details but chemo just sucks:)
Over the weekend I did a lot of journaling and self-reflecting and what I came up with was this….
I am a fighter. I always have been and ALWAYS will be! I know now when it is time for my body to take a break and so I take one. I hate that I have to sometimes nap in the middle of the afternoon but it is something that comes with this disease. Chronic exhaustion and pain.
I can handle anything that comes my way. I will ALWAYS find a way to fix a problem. So having NMO is just one more to-do added to my list! You know I looove a good list! lol
Sense of humor is so important for anyone going through a life changing moment. Whatever the case may be. You need to be able to laugh and smile at the end of the day. You need to override those feelings of anxiety, depression, stress and anything negative! Really enjoy the simple things in life such as fresh air and sunshine! Two of my faves.
There are going to be friends and family that you wish could understand what you are going through. But they won’t be able to just be there and some will just drift away unfortunatley. And some you will become so close to that you never would have expected. You just need to keep your circle tight and filled with the ones that love, support and truly appreciate you. They are the ones who are going to help you get through everything!
All I know is that I would never be where I am mentally, physically or emotionally if I didn’t have “MY circle”. They are everything! You know who you are:)
If you are still here thank you for taking the time to read this very long post. I wanted to share something that has been on my mind all weekend. Hopefully I will be able to help someone else out there my sharing my story…
For more information on Neuromyelitis Optica (NMO) please visit The Guthy-Jackson Charitable Foundation here.
Throughout my journey of finding my true diagnosis I realized that I wanted to create a happy, healthy, positive and productive space for other patients. A place for everyone to share stories and bring awareness to their diseases and illnesses through video and voice. I knew that if I was willing to share my story that there would be others out there that were feeling the same way. Others in need of learning more about what a family member or friend may be going through. Others searching for answers from patients actually living through what they have been diagnosed with.
Knowing that there is power in numbers and always hope ahead…
The place I created is called the Just For Us Community which you can become a member of here.
Well there you have it. My very long story semi-short. Yes! This is the short version of my NMO Anniversary coming up. Am I emotional? Absolutely! Will I give up? Never! And neither should you. This goes for anything and everything. Be the fighter you deserve to be. There is always a brighter light ahead. I promise:)
Wishing you a wonderful week!