Over the last 12 months I have honest to god been through hell and back quite a few times. I have been mentally, physically and emotionally exhausted more than I could have ever managed possible! I’ve shed gallons of tears, punched multiple pillows and screamed out of pure frustration until my voice was completely gone. More times than I can even remember at this point.
You always hear people say that the man or woman above will never give you more than you can handle. And I am a firm believer of everything happens for a reason. But come on!!!
I’ve asked myself multiple times every single day this past year…Why me? Am I going to die? Is today the day that my time is up? Am I going to feel pain when it happens or will I go peacefully in my sleep? Do I share my story or keep it a secret? How am I going to be able to work if I go blind or my body becomes paralyzed?
Pretty depressing right? I blame a lot of those dark days on being on way too many medications. As of today I am happy to say that I am no longer asking myself those questions or taking the crazy amount of pills that I was on for so many months. The withdrawels were the worst by the way! OMG!
For those of you who are reading this and unfmiliar with my story I was “officially” diagnosed with an autoimmune disease called NMO which stands for Neuromyelitis Optica. It is a very scary disease and one in which you are usually misdiagnosed with having MS at first. That is what happened to me. For those of us that have NMO that is a very scary situation because some of those MS drugs can actually kill us! I was a lucky one. I didn’t take it even though it was in my fridge. I just had a feeling to go with my gut (like I always do) and wait until my 3rd round of MRI’s that my 3rd Neurologist had ordered for me.
To make my very long story short. My 3rd Neurologist said that if I didn’t want to take the drugs prescribed my only option was five days of IV Steroids which would suppress my immune system and prevent a relapse. So I said yes to that treatment.
I ate like a piggie throughout that time (as expected when you’re on steroids) and on the 5th day my blood pressure skyrocketed to 263. I was immediately rushed to the urgent care across the hall which then put me into an ambulence and rushed me to the closest hospital with a neurology team.
I then spent 9 glorious days inside four walls of my hospital room. That is where I met my 4th and final Neurology team who then ran every single test twice that I had previously done throughout the year already. That included 3 more MRI’s and a lovely little spinal tap! Sounds so fun! Right?
I went through 15 IV’s during that time because my veins are apparently invisible. Thank god I have a port now! I mean a metal device in my body for the rest of my life is much better than the anxiety and stress of someone trying to find one of my veins now. I’ll tell ya getting bloodwork done now is a piece of cake for me!
It was on my 5th day of my hospital stay that I received my “official” diagnosis of NMO! I cried tears of joy! I felt like I had just gone through a life long court battle and had come out a winner! A winner I was. And the ones who were wrong were the three previous Neurologists that were trying to tell me different.
I am leaving out a lot of details of the pain and suffering throughout because I just wanted to share my story and somehow still keep it light! I hope I’m doing a good job!
Over the last year I have had to get 12 MRI’s, 3 spinal taps, more than 25 labs (some were 37 viles at a time), 5 days of IV Steroids (mentioned above) and 5 days of IVIG Treatment while I was in the hospital. I’ve had to go through months of physical therapy and now Chemotherapy. This right here would explain my lovely weight gain. However, I am happy to announce I’m finally down 10 pounds now:)
Cut to now. 12-29-17…
I had my last Chemo of 2017 yesterday which is why I’ve been able to work on my computer 12 hours today. The first day I’m usually wired and then I crash a few days later. It was my 9th treatment in only a few months and with my port I feel like a pro! I’m just praying I don’t have the week of bedrest like last month. Praying. Praying because that was the worst pain I have actually felt throughout this entire year or in my life!
I am saving every ounce of energy I have to ring in the new year with the biggest glass of champagne I can find because I dam well deserve it and so do my friends that have stuck by my side throughout this past year! I don’t even have words for how thankful I am for them. That also goes for my doctors and nurses who have completely saved my life!
Sitting in bed watching tv one minute. The next you cannot feel your arms or legs. Feelings of electricity running up and down your spine and body. Seeing white lights and then nothing as your best friend is rushing you to the hospital. That deserves a glass of something right? And my best friend a bottle!
That is just another glimpse into NMO…
I wanted to share my story tonight because it feels good to get a lot of this out. It feels good to know that I have a 150% correct diagnoses and treatment plan after fighting for my life for more than one year. I have a team of doctors that I fought like hell to get. A team that is familiar with this disease and knows how to treat it correctly. NMO is extremely rare and only 4,000 patients in the US have it.
I want to share my journey with you (trust me it’s a lot longer) because you need to be your own advocate. You must speak up for yourself because nobody else will! If you need a second opinion get it! If you need a 3rd or 4th get it! I did! And look where it got me! Back on top and starting to finally feel like myself again.
It doesn’t matter what you are going through in life. We all have our stories. The only thing you need to keep telling yourself is that you are going to make it through. If your family and friends slowly drift away because they don’t understand or for some other reason it is ok. You know who you need on your team to keep your spirits up, your laugh in tact and a smile on your face. You may laugh and cry at the same time. You may sink into a depression and be filled with a rediculous amount of anxiety but I promise you…
You will make it through because I did! And if you don’t have a team I will be your biggest cheerleader!
I hope that by sharing my story with you tonight you will open your eyes to what is possible. You fight hard enough you will win. This goes for everything in life! I’ve always been a fighter. This year I just decided to take it to a whole other level. Not by choice of course but I feel like now I can do anything I want!
You have to give yourself the permission to cry and seek help when you need it. You have to know when you are wrong and apologize. You have to always know that everything does happen for a reason and mine is this. To spread awareness of NMO especially for those who do not have the strength as I hold it for them.
Not every day but most of the time…
As of today my Chemo treatments will be every six months. That is wonderful news for me. I started off going every week, then once a month and now just twice a year but for the rest of my life. Sounds awful but it could always be worse.
I’ve lost enough hair from this drug and the stress added on top. Just FYI if you see my blonde locks again it will be my fabulous new wig as my Dr’s told me to stop dying my hair. If you know me well enough you know that I did not listen! I’ve been through enough shit this year just let me get rid of my dam roots so I can smile in the morning! lol
So to sum up this very very very long post…
Please know that wherever you are and whatever you may be going through you have a friend and supporter right here! We only have one life and we need to make the most of it! With a smile and a sense of humor.
Find your tribe and be the best you can everyday and know that they will always be there to support you just like you will for them!
I think that’s all I have in me tonight!
Sorry. One more thing. The most important!!! Me forgetting. Yup! That’s called Chemo brain and I am definitely suffereing from it right now.
There is currently no cure for NMO! Please take a moment to learn more about this disease below. And if you have an extra five bucks to donate to help find a cure that would be incredibe and I thank you in advance.
Last but not least. Thank you for making it this far. I think now I owe you a drink! LOL.
I wanted to let you know that I will have two new shows up on The Happy Workaholic Podcast tomorrow. This will make it an even number of 40 shows thus far.
I will be sharing some very exciting news on those shows that you will not be able to find anywhere else so you are going to want to tune in.
Thank you again for allowing me to share my story with you. It truly means the world!
Wishing you all a wonderful, happy and healthy New Year! 2018 is our year!
XOXO AND CHEERS!
***The Just For Us Community was created for anyone going through a tough time in general. Health, heartache or just in need of some happiness. It is a safe place for you to share your feelings, find a few friends and most importantly know that you are not alone!