I Messed Up!
Yesterday was a bad day in the life of mine! All within the same day I lost my new job and missed my appointment for my Ocrevus position!
Yes, you read that right! I have a horrible time remembering anything and this time it messed my life up majorly! Recently I Accepted a work from home position with TTEC with all intentions of being done with my infusions for the next 6 months this week, allowing me time to recover and able to start training on Sunday at 10am. Well that is what I was hopeful for at least.
Well my memory screwed me up and I have the wrong day wrote on my calendar for the infusion to be today the 23rd of April, but it was actually yesterday the 22nd. Missing the appointment then forced me to have to reschedule the infusion for Monday the 27th at 7am. Thus, causing issues with the training schedule I am 100% responsible for being logged into every day with no excuses allowed!
Now I am trying to resign from my position, send back the computer and look for another position all while trying to figure out if my life is always going to be this complicated. Now I have this large box sitting in my living room and I have no idea how to send it back, I have tried to contact TTEC multiple times asking how to proceed with my resignation to the position because I can’t seem to find the information anywhere!
Forgetting the name of a V.W Bug, is one thing but forgetting and missing an important infusion is not good. I know my newest lesion in my brain is directly on a spot that handles memory and cognitive function, but I really hope that my new medication reduces the lesion and heals the damage that has been done so I can get back some of my memory.
All of this is my fault and I know and understand that as a person with a chronic illness and one that effects my brain that this situation happens and when it does I will have to role with the punches and go with the flow.
Still doesn’t make it any easier when you have to choose to have a job or care because you forget an important meeting and have to change your life around, but I am kind of glad this happened because honestly a company who doesn’t respect your need for care like a CHEMO and the need to reschedule training for a different week is a company you probably don’t need to be working for while fighting a chronic illness.
My First Ocrevus Infusion!
First off having an Immune depleting medication done during a huge global crisis sucks and makes everyone go crazy. So during this time I have been locked down at my house no one in or out except for major needs.
April 7th, 2020 during the world pandemic of COVID-19, at 8:00am central time, I had my first half dose of Ocrevus, the wonder drug itself. 6 hours spent hooked up to an IV drip was definitely a very long day.
The day before, knowing the side effects I dropped my niece off with my best friend and her family, took a trip to the local Wal-Mart to grab final supplies before I became Immune Compromised. I did what I could anyways, as her birthday was also in a couple days and Easter today. I tried to go to bed early and not think about anything else after that.
Once my alarm went off, I was up and changed into my new favorite shirt. (see Photo) I UN-braided my hair and added a little makeup. The drive to Pensacola was very nice and beautiful in the early morning. My infusions take place at the Sacred Heart Infusion Center in Pensacola Florida. Its about a 45 min drive. I was so scared as I was alone, having my spouse in a different country in his own lock down, and unable to have anyone join me in the center there was no way I could find someone to hang in my car for 6 hrs., all while I was inside getting my infusions. I was worried what would happen if something bad was to happen during the infusions.
The check in was easy as I walked up to the hospital, as they asked me questions, took my temp, and gave me a sticker stating that I was checked in for Covid-19 screening. I was walking in with 3 bags, 1 was my weighted blanket and pillow, 2 was computer, snacks, water bottle, and 3 was purse with headphones wallet, masks, and extra water, so my arms had been loaded but I was prepared for the day.
Check in was fast and simple, I was handed a couple forms to fill out, and was called back within the first 5 minutes. My infusion nurse sat me down and we went through the Ocrevus medication information and side effects. She made sure I understood the risks of the medication. After that we started the IV, blowing one vain we started the IV in the other arm. First med was Benadryl and Steroids to lesion the side effects, they took about an hour to infuse. The Benadryl worked well also making me a little sleepy.
Once the Ocrevus was started my day went well, my amazing husband stayed awake in order to talk to me throughout the day. I was nappy so I took a nap here and there, but I did well. Not one side effect except tiredness! So once the infusion is finished, I must sit for an hour of observation time. I was able to leave around 1pm and I stopped for some fries and a drink.
The next couple days went around fast, a small headache and some major back-pain I feel so lucky that this infusion went by so well. I hope that it goes well my next infusion and I feel very grateful that I seem to be the lucky one.
Anyways thank you for reading and I hope this brings you some information in my life and don’t forget you can now order my stickers through this website! Check it out on the Artistic page!
Also I have clothing for sale!
Go to :
I have been working on learning digital art myself, and while everyone is sitting at home during the Covid-19 Virus outbreak you yourself your even your children can download a digital art site and start learning how to draw digital. Like I said I am teaching myself and have yet to read a book or study any online learning spots, I am just learning through trial and error.
The download I use is called Krita and it is 100%free now I am sure you can buy more brushes and options if you would like but like I said I am learning. It is hard to figure out at first, learning layers and brush pen settings, your lines are not as easy and you have to figure out how to re-learn to draw. But using digital has so many awesome benefit’s, such as you can constantly add to or remove to the digital art as like there was nothing there, allowing you constant growth in your artwork, unlike paper or canvas art that once it is done you can not 100% re do again.
I just did a Jar drawing on Krita and I would like to show you a few steps that I took and how I saved multiple steps so that way I can go back and just change the inside of the jar and keep the outside jar the same. So if you follow a little with the photos I will show you how i went from a simple jar to a jar with depth.
As you can see, I slowly moved through this bottle one even looking as if it was a bottle with water on the inside. And honestly that was a random mistake, but it looks so cool. I decided to keep it! You can also see the lines on the original Jar are still very rough and not the best. As I worked on it, I continued to smooth the lines as I went, but the concept is still there for other drawings that I would like to do further down the road.
As you can see from the screen shots of my computer you can see the layers in the right hand side of the photos, each layer lays the depth of the art as if the liquid is actually in the jar and not placed outside of the jar. This is new to me and making myself learn this concept is interesting, but the best part is I can change the layer as needed.
Using this method can allow me to work on one thing and not disrupt the actual image, that is how I managed to change the color of the one to look like water. I was just messing with changing the background color to of everything to a teal color and after I decided not to do so I changed it back to white and left the layer up while working on other layers. Then when I went to look through the layers, I found that the light teal was left behind. So, all by mistake I made it look as if it has water inside the jar.
So, take your time to learn layers and how to build the look, I am constantly learning more about how to change things and also importing photos and changing them on the site themselves. I took a drawing I did and messed with it so see how it would turn out. I don’t know if ill do so often, but I like the fact that I can do so if I really wanted to!
Anyways this is your little intro into Digital Art on Krita (BTW, not sponsored)! Thanks for reading and remember to follow me!
All art is NKS Artwork done by myself the Chronic Artist and available to purchase copies!
Yes, this exhausting, over worked, and annoying, tired that we suffer from. Some days its just a underline feeling of tired, one that you could just take a short nap and then waking rested and recharged, or other days it’s like a nonstop daunting feeling that your cased in cement and unable to move or even breath. These days are usually after you forget to limit yourself and the response your body has to that mistake. This mistake can cause you a numbered amount of down days, those days you just hate life. Your body flairs and every fiber of your body hurts. Today I feel this way, because I didn’t listen to my body tell me to slow down! It yelled at me and I ignored it. I go days feeling amazing even forgetting that I myself have Multiple Sclerosis, to have that S.O.B run up and smack me in the face.
It is one of the worst feelings I have ever had to come to terms with and one I still fight now and then. I grew up in a small farming town, to two amazing hard working parents that instilled in me the work ethic of an Ox, and then one day your working hard, highly active, and doing life well, this shows up and you have to constantly swim up stream every second your awake. You can’t do something today because you did something yesterday, now you must stay down and be out. So many people assume that we can easily just get up and fight through it or take a nap! These people don’t truly understand, this pain, this tired, this inner emotional pain we have. I hate telling people no and explaining that I can’t because my body wont physically doesn’t allow me to move.
It's not a cop-out on the work or the excuse of lazy. I seriously thought the same thing years ago before I had my first major flair and after I still tried to tell myself that I can fight the pain, tired, and illness by just overcoming it. Boy was I wrong, and now I watch others judge me because I limp out of nowhere, or cancel plans, or say I’m tired even after I just wake up, for them to say “oh I get that way” “just get over it”, “your will be OK, just try this…..”. When all we want is for someone to listen and understand that we honestly can’t get moving, over it, or to take a “magic pill” to feel better.
This pain might not be visible to you or others but to us we feel it. It is here, it is horrible and all we want is people not to judge others when we say we can’t and make us feel worthless, because we can’t continue a happy charade to just please your idea of what we are. Offer to have a make up on a girl’s date, or activity. Offer to help do the dishes, bring dinner, or just sit with us when we can.
We are the chronically Ill and we are chronically tired!
Don't forget to follow me.
I will also start selling my artwork stickers in a week or so including my sleepy sloth! Who wouldn't want this cute sloth anyways!
What Is MS
March is Multiple Sclerosis Awareness month, and I hope you will follow along with me this month to share and spread awareness of this chronic illness.
Let’s start by explaining what Multiple Sclerosis is in medical terms.
“Multiple sclerosis (MS) is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. The cause of MS is still unknown. Scientists believe that a combination of environmental and genetic factors contribute to the risk of developing MS. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease.” Quoted from (https://www.nationalmssociety.org/What-is-MS)
Now that that is out there, what is M.S to someone diagnosed with it?
Well to me M.S is the great scary unknown, It’s the worry of waking up one day, not being able to walk, use the restroom, see, or move a body part. It is the worry that my husband will someday have to change me, wash me, see me in hospital beds, unable to do anything to protect me. It is watching my mother blame herself, feeling unable to help her child, worry all the time that she won’t be able to be near me! It’s not being able to enjoy the activities when you want to, being in so much pain you can’t move and no pain medications work, being so tired even after just waking up, losing your eye sight every day in one eye when your stressed, hot, or tired, and the numbness, twitching and shocking of your muscles and other body parts.
Even with all that negative and scary information, M.S is also the positive, It is watching the weakest people overcome and succeed past the expectations. It is watching people who have no hope, fight and help others learn to fight through the hardest parts. The community who raise awareness and funds to help the ones who can’t help themselves so they can have a fighting chance. It is the ones who truly listen to you and your issues who understand on a deep level. The ones who will call, message, and even send EMS to you if you are suicidal and depressed. I have seen the best encouragement in people who are the most effected to those who are still mild in their progress.
Just because one is scared themselves doesn’t mean we wont help others overcome their fears and worries. Multiple Sclerosis cant scare the best of everyone and it is ok to feel those feeling, that is the human in us. As it is said “The only one to kick our ass, is our own selves”. Continue to fight, to try, and remember to breath!
Having M.S stopped me in my tracks for a long time. I have went from wanting to become a teacher to being to scared of the medical issues and time needed off to continue the journey. Even then though I continued being a nanny and babysitter for families. Now that I’m starting Ocrevus that option is ending also, so I decided to start up to start selling my art works and doing commissioned art works. As latter you will see those post to start buying. The funds of this will go towards my medical costs. As many of you know it is expensive to be chronically ill, I myself spend close to 30,000$ a year and that’s out of pocket. Sometimes its more and sometimes its less. So a little extra helps allot.
Anyways this is M.S and this is the Chronic Artist saying thank you for reading and following. It means allot!
Ocrevus, new treatment!
First off I am not a doctor or being paid in any way for this information or branding.
Now that I have put that information on here, I would like to talk about my new and 100% approved medication as a DMD (Disease Modifying Drug) to fight against Multiple Sclerosis.
So I have used other DMD's since I have been diagnosed back in 2017, both have been injection medications subcutaneously. The first was Extavia an every 3 day injection that I would have to mix and inject at the same time every time. This medication would cause my body serious damage and made my life hell, I seriously would dread looking at my body, or placing the needle into my skin. The side effects didn't start right away but once they had they progressed fast. The other issue I was having was the fact we wanted to start a family and with this medication just like many other M.S DMD's is the high risk they have to a fetus. Well as the side effects made me hate my life every 3 days, I finally called and TOLD my Neurologist that I was stopping the medication and to find me something I can take while TTC (trying to conceive). Below is an image of the injection scaring Extavia caused me, and why I started to hate myself. I looked like this for years after stopping the injections.
Yeah, ouch right! My next medication was Glatopa a generic form of Copaxone. This injection was an every day injection subcutaneous (in the fat) for those of you who don't know. This medication was not bad and honestly I didn't have any side effects. Though saying that there was issues still. One being that it was nightly and had a process to do every time. So a simple injection took more around 45 min from start to finish every single day! Second the injection felt as if I was stung by a wasp and had to take tylenol 30 min before injecting, and also place a warm "Hot Water Bottle" and the site after for about 30 min after. The medication had to be refrigerated but at room temp for injection itself. We then lost our insurance and my medication became to much to pay for, and after the move to Florida we started I.V.F. so we figured stopping all MS DMD's while doing the process.
That takes us into now. My husband is stationed in Japan at the time and we made the choice to no longer wanting children, and we are ok with that because that choice opened up allot of options for both of us.
I never was tested for J.C Virus so we started there to find out what medications I could take in the first place, but we were sure I would be starting Ocrevus. Well after blood work was done and my Virus load was very high, to high to try other DMD's it was decided.
Now the website ill add at the bottom of this page and you can look at it yourself, but here is a down low on what I know so far.
Ocrevus is an Infusion Medication the only DMD to have shown signs of slowing progressive multiple sclerosis. It is done in at an infusion center that provides medical attention when needed. This infusion takes around 5 hrs to complete unless there is other issues. The risks are many, but major are allergic reactions and death. The other issue is the fact it strips your bodies immune system and tries to re-figure it to work for you and not against you. So this leaves you compromised and able to pick up germs easier.
The cost of this twice a year infusion could scare the best of people also. Today I got the call saying that I was approved and that my insurance covers 90% of the cost and all I needed to cover was the 10%. I was like ok that is awesome and then she said the 10% price for once a year payment of 6,850.00$ yes you read that right. Did I mention that I was driving! Yes, I about died right there, but then she said (Coin insurance from the makers of Ocrevus) lets see if you qualify. Wow, that made me feel better, so we discussed and I am lucky enough to qualify and only have to pay 10.00$ a visit.
This med is scary and like I said before I am without my husband and I don't have a huge support system, but I do have a few friends. One my best friend is stationed here and lives a couple towns over and she will be my emergency contact and taking care of my niece while I will be having this treatment, but who do I go to for my own care?
That is a question I am most scared about, and one I have dealt with many times before. As my husbands job is both amazing, but not the best at keeping him near me when my medical is crazy. I am worried to be alone an hour away from my pups, my house and anyone who knows me. I will have to drive myself there and back and I may have to have a hospital stay.
But with all this we will prosper in order to more in life. These infusions will open my life to be able to travel and explore the world with my husband and that makes all of the scary part worth it.
Anyways this post is long enough! I will try harder to try not to share a whole story book. Thank you again. Also i am sorry for spelling and grammar, my brain doesn't work well sometimes.
Please follow me on Instagram and Facebook. links are on the contact page, and the home page.
Starting A Blog
So one fine day I decided to dabble in writing about myself in a BLOG. yes I have decided to share with the world the inner details of my life and how one like myself handles travel, moving, and growing as an artist, while dealing with a Chronic Illness.
As I grow and learn I wish for you to follow and learn with me. Please make sure to follow and keep up to date with my on goings.
Thank you again.
Your humble Adventures Chronic Artist
Multiple Sclerosis warrior, who is a striving artist and a enthusiastic world traveler.