A LIFE UPDATE FROM THE ER!


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.

*Visit The Guthy-Jackson Foundation here to learn more about NMO.

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.

Kelly

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…

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STAYING HEALTHY WITH AN ILLNESS

The Universe works in such a crazy way sometimes. Ironically this blog post had already been scheduled as the How To Series Refresh post for the day. If you saw my Instagram post earlier today then you will understand how I am feeling right now and why I am talking about the Universe.

As you may or may not know I was originally diagnosed with Multiple Sclerosis in August and now know that I do not have MS. I actually have an extremely rare autoimmune disease called NMO aka Neuromyelitis Optica.

You can learn more about it here…

Since then my personal and professional life has had to completely change. One thing I refuse to change is my positive attitude. Yes, I have those days that I cry and I am curled up in a ball in bed. But you will never see me posting a negative comment about it on Facebook. I just don’t want to bring negative energy or comments into my life! Although today I am human and was definitely heading in that direction…

My advice to anyone with a medical condition is to surround yourself with the most positive group of people. That includes your Doctors! Seriously even them! You have to be strong for yourself in order to get better and stay healthy. My mantra which you’ve probably seen me post before is Positive, Productive, Happy and Healthy. And this is how I choose to live my life…

The first thing I did when I found out I was sick was search for other patients online. I needed more information. I needed to speak with others that knew exactly how I was feeling. I was just thrown into a world of unknown and needed to find answers and others going through the same experience. And that is what I continue to do every day. Now I use my voice to help spread awareness about all of my recent diagnosis in the JUST FOR US COMMUNITY.

There are so many people out there that think they are alone. But they are not! They just need to want to find others out there. They need to be extremely proactive and want to do it. That is a must! Trust me it’s a full time zero paying job being your own advocate. I know my voice matters and can help others if I use it. I realized this when I started posting videos about my chronic illnesses. I’ve received hundreds of messages and emails from others wanting more info as well as providing me with info that I am so grateful for and messages thanking me because I made the video in the first place. That part is and still is crazy because I was just doing it for me! I needed an outlet…

I remember the day I got diagnosed. I cried my eyes out. My friends hugged me and told me I was going to be OK! I called my family and then posted on Facebook for the world to know. There is no way I could hide this! I needed everyone to know so I could find others that were going through the same thing. I needed help and answers as this was the one thing I just could not fix or change. I was so frustrated but thank god for social media because that is where I found everything and everyone I needed to know! Part of me didn’t want to post because of clients finding out. But then I thought if they think I couldn’t handle their workload then they didn’t really know me. Everyone knows I am a Happy Workaholic and always have been. And they know my personality, which is I NEVER EVER give up!!!

After my post on Facebook I went to Instagram. I began to search every hashtag looking for friends, a community and more answers. That is how I found my friend Jennifer Finney. She caught my attention right away! She had a spunk and positive energy about her that I know I could relate to! There was no “Negative Nancy” vibes about her which I loved. Everything in her feed was positive so of course I introduced myself and followed her. I then decided we needed to be friends on Facebook! Thank god she accepted! lol

I mean if she were in Las Vegas I’m pretty sure we would be besties by now! Although I think we are online…

Right Jennifer? lol

We’ve messaged each other all positive notes and she always answers my questions. We both also love to cook delicious healthy meals. I mean obviously I was sold! lol.

Thanks Jennifer for always being there for me especially when I needed it the most!

I am so lucky to have found you.

FYI…If you are one of those people that cannot understand or comprehend how you build relationships with others online this right here is a prime example. Contact and engagement!

When I started putting together the ideas and concept of my How To Series I created lists of friends and clients who were amazing at their job, career, achievements and those who inspired me!  A list of friends that I wanted my readers to learn and know about! Jennifer was the first one I added on the Health and Wellness list.

I asked Jennifer to share her story as it is truly remarkable. I also asked her to share her tips on being healthy and fit while having Multiple Sclerosis.

These tips go for anyone going through a health situation so please know that it is not just for MS patients.

Also we are not doctors. We are just two women sharing our story and journey with you today.

Here is Jennifer Finney’s story…

I wasn’t always fit and healthy. In fact, most of my life, I was obese. Until a few years ago, exercise and eating a healthy diet were way down on my list of desires and priorities.

I often used MS as an excuse to NOT take a walk with girlfriends or learn to cook healthy meals.

But four years ago, that all changed when I decided to overcome my excuses and just see what would happen if I changed my diet and started exercising again, in spite of my MS.

After making regular exercise and eating a diet centered on whole, unprocessed foods a priority, I’m happy to report that I’ve lost weight, gained energy and stamina I didn’t even realize I could have, and gained more mental strength than I ever dreamed possible.

Of course, having MS definitely has its challenges when it comes to exercise. For myself, I typically have a numb right leg and foot, I struggle with stamina in heat, and my bladder has a mind of its own.

But, as the experts say, exercise is vital to our overall health and well-being, so I’ve figured out how to “do it anyway.”

Remember, it’s always a good idea to check with your doctor before starting any new exercise program. But most doctors will tell you that the benefits of physical activity far outweigh the risks of getting hurt. So if you’ve got the clear, and you’re ready to get started, here are a few tips for you that I’ve learned over the years and apply on the regular for myself and my clients.

Tip #1: Know your body and don’t be afraid of it.

It’s okay to push yourself beyond what you think you can actually do. I started exercising by walking on the treadmill, later moving on to the elliptical when I built up enough leg strength and cardio vascular stamina.

I did as much as I could in the gym until my bladder problems and wonky right leg started making it difficult. So I switched to the lap pool where I could pee with abandon and it didn’t matter if my leg was numb. When I injured my shoulder I had to find another way to work my body and my heart.

That’s when I found spinning. Tough as nails, spinning strengthened my legs and my cardio vascular endurance by leaps and bounds. Plus, I was able to lock my feet into place so again; wonky leg was not an issue. Yay!

I’ve since moved on to doing many different at-home workouts, being mindful of my body.

Working out at home is a great solution for me, because I can control the climate and my bathroom is seconds away. I also try to incorporate stretching and some sort of yoga practice, which has helped a ton with balance and flexibility.

Tip #2: Listen to your body.

It’s important to be mindful of what your body is telling you during and after, exercise.

If you’re in the middle of exercising and you feel pain or feel like you need a break, it’s totally okay to take one! Stop what you’re doing, wait 10 minutes to recover and then start up again if you can.

I try to be very aware of the signals my body is giving me all the time, not just during exercise.

If I have muscle soreness, I take an Epsom salt bath. If I am exhausted after several days in a row of strenuous exercise, I take a day off to rest. If I need a nap, you guessed it, I take one!

Tip #3: Have fun!

If exercise is something you dread, then you’re doing the wrong thing. Try different types of exercise until you find the one that really is your sweet spot.

For example, you may need to get off the treadmill and call your girlfriend to go for a walk in the neighborhood. Or try the elliptical machine or swim laps the pool.

Switching up your routine isn’t just good for your body, but your mind, as doing the same thing all the time gets boring and your body gets used to it.

Also, put together a playlist full of your fave pump-you-up tunes, or listen to a podcast while you workout.

I used to LOVE listening to a Comedy radio station in the gym and found myself LOL’ing and getting the “what are you laughing at” look by other gym goers more than once. haha! Which made everything even more hilarious!

The important thing is, do what you love! If you don’t love it or enjoy it, then it’s time to do something else.

In the end, the most important thing to remember, no matter what, is that you just can’t quit altogether. The way I see it, the day I quit taking care of my body, with how I exercise it and how I choose to nourish it, is the day I decide I’m not worth it.

It’s the day I decide to let MS win.  And I’m not about to let that happen as long as I can help it.

So to recap, know your body and don’t be afraid of it, it’s capable of a lot more than you think. Tune in to your body and do what it’s telling you. If you need a break, take a break! And finally, have fun! You’ll be much more apt to keep going if it’s something you enjoy, not something you dread.

And, of course, whatever you do, DON’T QUIT!

You CAN totally do it!!!

About Jennifer Finney…

Jennifer Finney has had MS for 12 years. After losing over 100 pounds by changing her diet and exercising, she now coaches women who desperately want to lose weight without dieting.  She gives them the tools they need to jump off the diet roller coaster once and for all and live a life they truly love.

When she’s not busy helping women transform their lives, you can find her indulging her inner rock star on a Sunday morning singing with the church band, enjoying a movie night with the fam or savoring a grande soy latte, no whip. And of course, chocolate will forever and always be her love language. ❤

Find Jennifer on her pages below and be sure to tell her I sent you…

Website

Facebook

Instagram

As always if you have a question or something inspirational to share please let us know in the comments below or on our social media pages.

Until tomorrow…

KAG

PS If you are someone who is looking for a few friends online I have started a community called JUST FOR US.

The JUST FOR US Community has been created for anyone going through a tough time. Health, heartache or just in need of some happiness. This is a safe place for you to share your feelings, find a few friends and most importantly know that you are not alone!

For more on my health journey visit my page here.