I’ve been going back and forth over the past few days on whether or not I should publish this post. Normally I would just record a podcast but seeing as though my voice sounds horrific now (thanks to my steroids) I’ve decided I am not going to put you through the torture of listening to me for 30 minutes. So here I am typing it all out with my right hand. I’ll fill you in on that shortly…
So, as you may or may not know I have an autoimmune disease called Neuromyelitis Optica. NMO for short. It is a disease that has no cure and one that I am getting chemo treatments for. Treatments that I will have to get until someone finds a cure. This is a disease that can (in a few minutes) leave me blind and/or paralyzed at any given moment. It is some scary shit to say the least!
I have always tried to be positive, vocal and strong when talking about this online. However, that is not always how I feel. I feel lonely, sad, depressed and anxious. I constantly question why this is happening to me. Why now? Did I do something to cause this? Questions I obviously do not have the answers to.
When talking about my disease on my podcast, a Facebook live or a YouTube video I have always said that I feel like I have this for a reason. That reason being that I am strong enough to fight (most of the time) as well as speak up for others who are afraid or don’t quite have the courage yet. I will be their cheerleader of sorts. I have the platform to do so why why not make it more aware to others? For others? Right?
I am writing this today to give you an update on what has been going on with me “behind the screen”.
Over the last two months I have had three relapses. The last one was this weekend. The time before that was a few weeks ago and ended up getting me admitted to the hospital. I am on steroids again to suppress my immune system until I meet my new NMO Specialist next week and we schedule my next chemo treatment.
I know for sure I need it as I never had my treatment in June. I pushed it because I honestly was scared to get it. I also felt healthy and thought it would be ok to wait until I lined up all my new doctors. My body however had other plans for me…
So, a few weeks ago I thought I had sprained my left wrist. The pain was so annoying so per usual I took an ibuprofen and moved on with my life. By that I mean continued to work and type with my right hand only.
Days went by and the pain got worse and started to travel up my arm. It felt bruised. It was honestly an odd feeling. As I was on my way to get a much-needed pedicure something told me not to go inside. That inner voice of mine was telling me something was wrong with my left wrist and now arm and I needed to go to ER and get it checked out ASAP.
I run my business online so typing with one hand only was getting a bit ridiculous! However, I’ll have you know that I am really good at it and surprisingly fast! lol
Long story short my left wrist that I thought was sprained ended up being inflamed nerves triggured by by NMO. They were so inflamed that it caused that bruised feeling. You could actually feel them.
While I was waiting for my nurse to come back in and fill me in on the splint I had to wear my entire left arm went numb. Then my right. Next my upper back and into my neck. Lastly, the bottom half of my left leg. This happened within 5-10 minutes. Good thing I didn’t go get my pedicure, right? Thank god I listened to that inner voice of mine and went to the ER when I did.
The ER doctor said he had to then admit me, so I could be seen by neurology team and get the very high dose of IV steroids my body needed to suppress my immune system.
I was crying hysterically. Crying because I was scared, relieved and annoyed. Again, questioning myself. Why the EFF is this happening to me?
I was immediately getting flashbacks of my last hospital stay which was nine days. There was no way in hell I was doing that again! Although, I knew it could be a possibility…
The one thing that did give me a sigh of relief was the fact I had a port this time. My last glorious trip left me bruised for about a month after being discharged. 15 IV’s and a two-hour procedure for a pic line that did not work. Hence why I now have a power port. One of the most painful procedures I’ve had to date but 150% worth it now.
I was lucky this trip to hospital. They let me out the next afternoon. I did not have to stay for a five-day IVIG treatment if I agreed to stay on steroids for weeks if discharged. The highest dose I have ever been on by the way.
The next few days were rough. I felt like I was going to literally blow up! I could barely see my eyes because I was so swollen. And the pressure headaches that come along with these drugs are unreal. I would also like to add that a side affect stated on the prescription bottle states loss of appetite! That my friends is a complete lie. It is the opposite. I know this because I cannot stop eating and I crave the strangest things all dam day.
After about five days I was feeling better. However, I still could not look at myself in the mirror. I am just feeling so huge and so awful from these drugs but know that this is the course I need to be on right now. I know it will pass because it always does, and it must because I simply cannot live like this! I don’t want to live like this! Therefore, I fight every single day!
I also have a whole month of planned video content that I no longer feel comfortable doing becasue of the way I look. There is not enough makeup or contouring that will make me feel better. I also cannot stop sweating and nobody wants to watch the hot mess express unless it’s on BRAVO! And I am not quite there. YET…
I finished my steroids last week. Two days after my doses were done I started feeling things again. My wrist started bothering me. My body was getting the electricity feelings throughout. I knew something was up.
I started coughing again. I began to lose my voice. My system was shutting down. I knew that if I went to ER they would just give me steroids again, so I ended up getting a hold of the on-call doctor and she sent me a prescription which was amazing. It took me six hours to get a hold of the doctor, but that time spent was well worth it.
Today is Wednesday and I started on another dose of steroids on Monday. I spent almost the whole holiday weekend in bed. I was so weak. I was so depressed and so so sad. My anxiety was through the roof and I just wanted to be in darkness. And I was! My doctor told me to rest and no work. Seriously? I’m THE Happy Workaholic. I LOVE to work but knew I really had to listen this time.
So here we are today. I am typing with my right hand again because my left one has the splint back on to help with the nerve issues I am having.
I am sharing my story with you today because I know I am not the only one going through something scary in life. Something dark and depressing. I want you to know that you are not alone! There is a light at the end. I promise you that. I have seen it so many times and I know I will see it again.
If we are strong enough to fight whatever may come our way, then be the light for the next person. Shine for them so they know that they are supported and loved. If you feel confortable talking about it then do that too!
We all have shit we are dealing with. Everyone has a unique story. That is what makes us all so different yet so relatable right? We are all on a different journey but our paths do eventually cross at some point. Where the happiness and sunshine is.
We’re all in this thing called life together. It is up to you to choose your path and whether you want it to continue in the right direction. I try to do this every single day. TRY is the key word here. There are always going to be good days and bad no matter who you are, where you are and what you’re doing.
For me I know that I will get back to my happy self. I am there now it is just that I am spending more time fighting and medicating these days rather then laughing and smiling but I know I will be back there soon enough. That is a promise I have to keep. Laughter truly is the best medicine!
My appointment that I have been waiting on for months with my NMO Specialist is next week. It is then I will get my next treatment plan and can move on with my life. Literally! I’ve got a mile long to-do list to take care of! A business to continue to build, brands that are relying on me and a group of clients I am so lucky to be working with.
Am I scared for this next treatment? Absolutely! Do I have horrible nightmares that my time may be up while in the chair? Yes! However, I know that I must convince myself to not think this way as I am strong and will continue to fight every chance I have and so will you when going through “the impossible”.
You have just as much strength to get through the thoughts currently going through your head. Trust me I know those thoughts all too well. My advice to you would be to get those thoughts out in a journal and try to meditate when time allows. That is what helps me the most.
Every day when I wake up I know it is a brand-new day to start fresh, to fight, to conquer and do what I love the most which would be connecting with others online and IRL as I run my business and enjoy my life to the fullest.
I have my brand for a reason. I have my podcast for a reason. Everyone has a story to tell. And this is mine.
Well there you have it. A little life update. How I’ve been feeling in the real, raw and right handed typed out version. And in under 2,000 words! lol
I hope that by sharing my true authentic self with you today I am able to shine a litle bit more light on a disease that needs more attention towards it. One that over 4,000 others are fighting with every day in the US. I am not the only one living with an autoimmune disease that fights and battles a chronic illness on a daily basis.
If you know someone dealing with something heavy today call them. Make them smile. Make them laugh. Make them cry tears of joy and happiness that you took two minutes out of your day to make sure they knew they were loved!
Here is to living my best day today. Happy, healthy, positive and productive.
PS I’m now sharing my NMO journey on my Instagram Stories and Highlights.